How I’m navigating my child’s two diagnoses

Parenting kids with multiple learning and thinking differences is often filled with many twists and turns. It’s a journey that requires a strong support system, resilience, and hope. And each day calls for patience and understanding from both parents and their children.

In this episode, we welcome Jennifer Bywaters. Jennifer is the proud mom of a son with dyslexia, dysgraphia, and ADHD. Listen as she shares:

• Her family’s journey of receiving multiple diagnoses

• The uplifting moments that have kept her family strong

• And what this experience has taught her about resilience 

We love to hear from our listeners. Email us at opportunitygap@understood.org.

Related resources

• Parenting guilt: Tips to get past it

• Guided meditation for stressed parents

• 7 things I wish people knew about parenting kids with dyslexia

Timestamps

(2:20) How Jennifer noticed her child’s learning challenges

(4:41) How receiving multiple diagnoses impacted Jennifer and her child

(8:44) What Jennifer has found most helpful when advocating for her child’s needs

(10:49) What Jennifer’s parenting journey has taught her about resilience

Episode transcript

Julian: Imagine standing at a crossroads, unsure of which path to take. For many families, this is a familiar scene, especially after receiving a diagnosis of multiple learning challenges. What's going on, OG family? Welcome to a new episode of the "Opportunity Gap." I'm your host, Julian.

Today, we're exploring the challenges of navigating to diagnoses of learning and thinking differences. We're joined by Jennifer, a proud, proud mom of a child with multiple learning and thinking differences. Jennifer is going to share the ups and downs she and her family have experienced and all the moments of hope that have kept them going. Hey, Jennifer. How's it going?

Jennifer: Good. Thanks for having me.

Julian: I appreciate you coming on, especially a mom in the mix. I'm excited about this one. Before we jump into our conversation, one of the things I always ask guests, what is giving you life right now?

Jennifer: Well, I think that as a mom, when you have children, they kind of like consume everything, especially when you have children with learning disabilities. And for the past eight years, we've been going through it and we finally are at a place with the kids that they're kind of OK. And I've been really just like digging in and diving in on taking care of myself and my health and like all the things.

And I am like super obsessed with just like, lifestyle changes to be more healthy and just things that I can do to feel better and thrive as a mom. So, that's been really exciting actually, is to just kind of have that time to take care of me.

Julian: Yes. Yes. Yes.

Jennifer: That sounds conceited that I say that.

Julian: No.

Jennifer: But as a mom, you really like pour everything into your kids. And so it's nice that I have a minute to kind of focus on just getting myself in a good place.

Julian: No, I applaud you for that. I mean, all these gray hairs in here are coming because these kids. So, I get it. I completely understand. I'm happy to hear that you're taking time for you. And all the moms out there, be like Jennifer. Take some time for yourselves, too. You need it.

Let's jump right into some questions I have. Can you share your journey of how you first recognized that your child might be having difficulty learning?

(2:20) How Jennifer noticed her child's learning challenges

Jennifer: Yeah. So, there were things that I didn't realize were signs I should have picked up on. But when it the first time, I'll never forget, my son was in first grade and the teacher called us in for a conference and she looked at me and she was like, "He's so smart, but he's not making the progress that he should be making reading. And I think something is going on."

And then she's like, "What are you doing at home? Are you doing these things?" And of course, immediately I have all this guilt as a mom, like, "Oh we're not working hard enough. I'm not doing enough with him at home."

And I had actually when he was in kindergarten, we started reading Harry Potter. He loved it. He would sit for hours, literally just listening to me read these books, making plot predictions that I didn't even make when I read it the first time.

I know he's super smart, but then, his first-grade teacher, you know, he's reading and he's missing these basic words that he should be able to read. And like, I knew he was bright, but that was the first time that she was like, "Something's wrong and I don't know what it is. Can you try harder?"

Julian: Wow.

Jennifer: OK, so we started trying harder at home. And then luckily I had a friend who was in my life just at the right time that I was talking about all of that. And she said, "That sounds like dyslexia." And I was like, "No, that's not. It can't be dyslexia."

And then she was so amazing to keep giving me resources. And I kept working at home and nothing was changing, even though we were putting in all of this work. And so, that was kind of how it started, it was that first-grade teacher going, "Something is not right."

Julian: That's just, that's a lot to unpack, right? Like one, I'm going to be honest, I'm an administrator at a high school and I don't love how she told you, right? Like, I don't necessarily love how the teacher explained, like, "Something's going on. You got to try harder." So, that in of itself is a lot. And secondly, I'm impressed that you were reading Harry Potter in first grade. That's pretty impressive.

Jennifer: Yeah, he started in kindergarten and we actually finished the whole series by the time he was like halfway through first grade. And that was the main thing that I kept saying "But he'll sit and listen to me and he can understand at this really high level. So, I know he's smart, you know."

Julian: So, going from having the dyslexia named, what else was going on? Like, there's a multiple-diagnosis situation here, correct?

(4:41) How receiving multiple diagnoses impacted Jennifer and her child

Jennifer: Yes. So, when it all started, I think back to because I mentioned there were signs before that I didn't realize were connected. When he was really young, he was having very like emotional outbursts and very hard to control just all over the place. Super hyperactive. And I'm pretty determined to like find solutions. And so, I changed his diet and cut all this stuff out. And he was so different, like a different child. And so, I'm like, "OK, he's just sensitive to those things." And I just kind of like left it at that.

And then he was having speech trouble, but we got help and then he was doing better. And I didn't realize that those speech problems were actually part, can be part of dyslexia. And so, when we got that conversation with that first-grade teacher and the ball started rolling, I started researching and I'm like, "OK, yes, this sounds like he absolutely has dyslexia." But I was, I didn't realize there was going to be more, like I was like, "OK, this is it. It's dyslexia, and then we can do this and it's going to be OK."

And when he finally, it was a whole fight with the school, but we finally got a private evaluation and then they were like, "Oh it's dyslexia and dysgraphia." He also had like a major heart issue that we were dealing with a physical, like open heart surgery, all of this at the same time. And so, for me, it was really overwhelming. And I was just like, "OK, I can't, I can't take..." In my head, I was thinking, "I can't take another diagnosis. Like, I just need to get through these."

And then it was later when he was older that I finally, like acknowledged the ADHD. And when we addressed that, then it just, that's when all the pieces started clicking. When I was finally able to have the brain width to take it all in and address it. And then that's when he really started making this amazing progress because we got like all the pieces together, so.

Julian: Got it. I mean, listeners, Jennifer is smiling the entire time that she's sharing her story. And I say that because it speaks a lot to you and your character as a mom. I mean, you had so many different things going on and the fact that you're strong enough to take all that in and stay focused on how do I support my child, that's really impressive. You know, you mentioned earlier about how you're proud that you're doing self-care and really supporting yourself, but what about your son? How did this hit for him?

Jennifer: Yeah, I have to say, I know he's my son, but he is just this, like really exceptional child. The dyslexia conversations started happening at the same time we found out about his heart. And then it was just for him, he's learning all of these things are wrong, and he just stayed positive the whole time. And I know that probably is partly because, as the mom, I was also, you know, like explaining things and tried to stay very positive with him.

But he also is very, he's very open about everything that's going on. He will talk to everybody. He is not shy. He's not embarrassed, which is really cool. And so, he has always been one to, like speak up and and like own it.

Like when he was still in, he is in virtual school now, but when he was in a traditional setting, he did was not scared to say — because he would use speech-to-text as an accommodation when he had a lot of writing — and people would be like "Why are you talking?" And he's like, "I have dyslexia and dysgraphia and this is hard. So, I'm going to talk into my computer. It's an accommodation that I have." Like he was never shy to like own it.

Julian: If you had to boil down or nail down all the different people or things or actions that you might have done to support your son, what are the few that you think were the most impactful or like the most helpful in advocating for his needs?

(8:44) What Jennifer has found most helpful when advocating for her child's needs

Jennifer: Thankfully, I had that friend that was like, "Hey, this is dyslexia." And she had already been through it with her daughters and she knew other people that had been through it. People that don't have children with learning disabilities really do not get what we go through to get our children the right services and the right help that they need to succeed.

There is a ton of research that says "If you have dyslexia, this is what you need to do so that your child can learn." But it's like, OK, how do I get those services? Or where am I going to go for it? Which one's the best one? There's so many things out there. And then which school? Because that is one of the hardest questions is what school is best for them to thrive. And there's not a lot of options.

And so, I had constant conversations on the phone with my friends like debating all the local options and like, where are we going to go? What are we going to do? So, having that support in my community of like moms who got it and also then having him hang out with their kids who also struggle with the same thing he struggles with. So, we were really blessed in that in this community, we were able to find a group of people that had dyslexic kids. And so, you're like, "Hey, he has dyslexia, too."

So, that was something that was really helpful. And also the other thing that I did a lot — and I use Understood actually the website Understood was so helpful in our journey just for me to like use the resources there to understand better what was going on and then to share those resources with our families so that they could understand what was going on. Because having your family get it and support you is huge.

And also using those resources to educate Nathan about what was going on so that he understood it too, because he was very curious and he wanted to know.

Julian: It sounds like you found your village, like you were able to find the people that you trust and you're able to find the people that could really not only share your experience but also work it through together. What do you think you've learned about resilience, like in this journey you've taken? Like, what have you learned about yourself and about him and about the idea of resilience?

(10:49) What Jennifer's parenting journey has taught her about resilience

Jennifer: I really think that this whole journey has been so challenging. But what I have learned as a mom is that I have to be relentless. Like I have been relentless. I refuse to accept like, this is just the way it is, and he'll get better later because that was said to me. Like, "Oh it'll click in third grade." Like I refuse to accept those things. And then with his heart stuff like it was an impossible diagnosis. I refuse to accept that. Like I have refused to accept what the experts have told me and I have sought out other options.

Some schools are great and some schools are not so great. And we were at one of those not-so-great schools. And if I had trusted and believed what they told me, we would not be where we are today with him thriving and doing incredible. I had to question them and say, "Wait a minute, I know you're supposed to be the expert, but this doesn't sound right. You're saying this, like this does not mesh with what I know about my son and what I've learned in the research."

And so, I was thinking about that today. Like I have kind of taken what I learned through his journey, and now I'm applying it to my health and my husband's health because there's been some things that we've just kind of like pushed under the rug as we've gotten through everything. And I'm like, "Wait a minute. We don't have to feel this way. Like, let's ask questions. There's got to be a solution."

And so, yeah, for me, that's been something I've seen like come full circle of like, OK, he taught me by going through this with him, it taught me she does not accept no for an answer. And so, that's something that's really, I feel like made me stronger and made our family better because I am always like, "Wait a minute, this is not, like we don't have to live this way. Let's find a solution." And I keep looking until I find somebody that has the solution.

And then we like all benefit, and I'm just so grateful that I refuse to quit. And Nathan is the same way because he has also refused to quit. We can do hard things in this family, and that was something that we had to say a lot at the beginning when he was going through some of these really intense reading interventions. And he still to this day, he works with a tutor one-on-one four days a week for an hour on top of all his STEAMS and honors, high school classes and his e-sports in his soccer.

Like he does everything, but he also still spends an hour, 30 minutes just working on spelling with his tutor, like and then writing. And he does it without complaining with a smile on his face. Because in the beginning it's like we can do hard things and if you do this, you will have the progress. And so, it's taught him too, that he can do hard things and that hard work pays off. And so, that's kind of what I've seen with him, is just like really believing in himself that he can do, he can do it because he has. He has done it and he has seen the result.

Julian: Well, you all, all of you have done it. You know, all of you have done it. And your story is a testament to how you all have gotten together and made sure that the resilience remains a fabric of who you all are. And I just can't say enough about how impressed I am with your story and impressed with you as a person and that you kept smiling the entire time we were talking about it because it's difficult, right? Like it's not, we don't want to sugarcoat that this is an easy journey by no stretch of the imagination.

But, you can't do hard things. And listeners out there, Jennifer and Nathan, are proof, they're proof that things can go well if you stick with it. And taking these things and really finding your people, finding your resources and making sure you have a goal in mind can lead to success. So, Jennifer, I just have to say, I'm really appreciative of you coming on. Thank you so much for sharing your story. Thank you for sharing Nathan's story.

Jennifer: Thank you. This has been so amazing. We love it, we both love to share his story because if we can help just one person or one mom to not give up from this interview, like don't give up, keep going. It's worth it in the end. It's easy to smile now because we've kind of gotten through. We still have challenges, do not get me wrong, but we've gotten through some of the hardest parts.

And so, to be on the other side of it and to see where we were and when I really thought that he would never get to where he is, like I didn't think it was going to be possible for him to do the things that he's doing now. And now I'm seeing him do it because I refuse to give up. So, I can smile easy now, To you, moms, because I can just help one mom not give up and keep pushing, like that's a, it's a great opportunity. I really appreciate being able to share.

Julian: Thanks so much for listening today. We love hearing from our listeners. So, if you have any thoughts about today's episode, you can email us at opportunitygap@understood.org. And be sure to check out the show notes for links and resources to anything we mentioned in the episode.

This show is brought to you by Understood.org. Understood is a nonprofit organization dedicated to empowering people with learning and thinking differences like ADHD and dyslexia. Learn more at understood.org.

The "Opportunity Gap" is produced by Tara Drinks and edited by Daniela Tello-Garzon. Our theme music was written by Justin D. Wright, who also mixes the show. Ilana Millner is our supervising producer. Briana Berry is our production director. Neil Drumming is our editorial director. Our executive directors are Laura Key, Scott Cocchiere, and Seth Melnick. Thanks again for listening.