Ep #75: Neurodivergence in Children: When a Disability Isn’t Visible with Michelle Steiner

What is an invisible disability and how do we know if our kiddos have one? Today I’m talking with Michelle Steiner and we had an incredible conversation about her experience having an invisible disability. We talked about what that looked like in school. We talked about what signs to look for, what’s the difference between, a difference in pacing, that there is maybe no real normal, children are all different. But when is that difference, that variance wide enough that we need to seek professional help?

One of my favorite things we talked about was the pros and cons of labeling a person with a disability and what that looks like. And conversations we can have with our kiddos around some of their learning challenges. How to empower them through those, and maybe how to minimize some of the discomforts of that as they’re working through really difficult things. This was a helpful conversation if you know someone that has a learning disability or neurodivergence, or if you’re wondering what that might look like and wondering what to watch for in your own children. This was a great conversation to listen to and very, very empowering and helpful. I hope you’ll enjoy it. It’s coming up right after this.

Welcome to the Raising Healthy Kid Brains podcast where moms and teachers come to learn all about kids’ brains, how they work, how they learn, how they grow and simple tips and tricks for raising the most resilient, kind, smart, compassionate kids we can. All while having lots of grace and compassion for ourselves because you know what? We all really need and deserve that too. I am your host, Amy Nielson. Let’s get ready to start the show.

Amy: Michelle, welcome to the show. I’m so happy to get to talk to you today.

Michelle: Thank you so much for having me. I’m excited about this conversation too.

Amy: Yeah, this is going to be so good. So tell us a little bit about you and why we’re chatting here today. I always like to kind of hear your story because I think it’s such a great intro into what we’re talking about and why it matters and why it’s relevant.

Michelle: Sure. Well, my name is Michelle Steiner. I live in Pennsylvania with my husband, Ron, and our two cats, Jack and Sparrow. And I work in a school as a parent educator with students who have disabilities and some who don’t. And I’m also a writer, speaker and photographer. And I have a blog called Michelle’s Mission where I write about life with having a learning disability and use a lot of nature metaphors and feature a lot of my photographs that I take on my walks because I’m unable to drive because of my disability. And I have a learning disability myself.

Amy: I love that we get to talk and have this conversation and get to talk more about it. I think, oh goodness, the more we can bring it into everyone’s homes and help everyone kind of just make it open and conversational and talk about what it feels like, what it looks like and things we can watch for things, what we do about it, just how we engage with it and learn about it. I think knowledge is power and helps us all figure things out better and be more supportive. And so thank you for coming and sharing with us and I’m excited to learn more.

And I wanted to talk to you about one of the things you talked about that we could discuss was this idea of, what are we looking for? I recently had a kiddo that was in high school and then diagnosed as twice exceptional. And I’m sitting here and for a moment, just feeling, how did I miss this? How did I not know? Maybe there were some signs and she’s doing really well but there’s things maybe we could have done earlier if I’d known. And so sometimes I’m thinking, what are we looking for? What are some things we should be watching for with our younger kiddos?

Michelle: A lot of times I can see when I taught preschool, a child that maybe doesn’t know their numbers or doesn’t know colors. That was a big thing. And it was really interesting because I worked in the preschool and I saw these students that were really struggling. And then later, as I got another job and I worked as a parent educator. I got to see some of these kids. Now, some of them didn’t remember me, but I remembered them. And some of them ended up in learning support. The ones who didn’t know their colors, their numbers or just really had a hard time socially and academically.

And I can look back on my own experiences in my life. I can remember when I was in school I had trouble tying my shoes in kindergarten. I had trouble counting. My preschool teacher could see that I was also really struggling as well. And I was my parents’ first child, so they really didn’t know what to look for. So they sent me to kindergarten and luckily my disability stuck out like a sore thumb. And during that time they really didn’t diagnose anybody, but that teacher could see that I was just struggling in the classroom.

And another thing, I would get dot to dot pages and I thought, I’m going to do them really well and I’d get them back and they weren’t done correctly. And I think a lot of times, it’s a parent, if they think something’s going on, talking with their child’s pediatrician’s a good start too, seeing if they are developing normal. Or even talking with their child’s preschool teacher or early kindergarten or other person, because sometimes they can have that perspective, that there are some things that maybe they’re just struggling with.

And they can get the help and the services, but I always tell parents to talk with the professionals and just to give a really honest perspective on their child.

Amy: And I think it’s interesting because I think sometimes, I don’t know, maybe we come in different groups. But I think sometimes we sit here and we think all children are different. I’ve been working on writing a book and one of the things, the stories I was telling, I had a kiddo that just really needed the comfort of my hand touching her, to walk. And we’re getting to 18/19/21, so she could walk just fine, but she needed my finger touching her shoulder to just feel confident enough to walk.

And then I have another kiddo who is running around at 11 months old. And sitting there, I think sometimes we look at this and we say, “Is there something wrong or what’s happening?” And in my case, we get to two or three years old, they’re both walking beautifully. They’re older now and there is no obvious difference between their ability to walk around, whatever. And so I think sometimes we overstress maybe or some of us do around, is this normal? Is this within the range of normal? Is this just children being different?

And they do things at different paces. So when do we know when to be concerned because there actually is maybe something that’s markedly different enough that it’s going to impact their ability to function versus just normal childhood variances and pacing?

Michelle: Right. Well, I know with my own experiences, I get this a lot. When I tell people, “I have dyscalculia, a math disability.” A lot of people say, “Well, I’m bad at math or are we all like that?” And I think it’s when you’re doing every single thing in a classroom for the child and you’re going over, we’re having maybe a volunteer or a [inaudible] is going over, “Here’s the times tables or the addition, [inaudible] subtraction.” And they’re still not getting it. It’s when you introduce how to read the face of a clock. I can’t do that because of my disability.

But when you do repeated interventions and some of this stuff just isn’t working or you see a child in the classroom and they’re getting [inaudible], maybe a math a group that’s tailored towards maybe some students who aren’t really understanding it and they’re getting the extra help and they’re having interventions that are coming in. And they’re just not getting it in the regular ed classroom. And the parents are spending hours, cheerful homework sessions, been there. And the child just is not understanding it.

And I think sometimes that’s when we want to start to take a look at is there something else going on and is there a different way to do that? Because if we can look at that, the worst thing that they might say is, “This is just development or something else.” And sometimes we can’t even tell that somebody does have one. I’ve known people that have gone through school and they got tested for everything, but they still struggled throughout the whole thing and just nothing was coming up.

And I was really lucky that every time I get tested for having one, I certainly do. So we know what’s going on and my parents explained my disability to me from a very young age in simple age appropriate terms. And eventually that helped me learn how I viewed myself. I didn’t view myself as dumb. After a while, I thought, I have a disability. These are the strategies that I need and these are the things I need to take into consideration.

Amy: I love this. Can we talk about this? I was telling you a little bit before the show, I’m like, “Can we talk about this?” Because I feel labeling is such an interesting thing, and it sounds to me that you feel there was almost value in knowing that you had a disability because it shaped your expectations for yourself and kind of how you did that. So I don’t know, talk to me about that around labeling because I think sometimes people are afraid to use the words, “You have a disability”, or something because it would change the way a child feels about their abilities and whatever.

So I’m fascinated by this idea and the wording around it. And talk to me about your thoughts about that and how that felt for you and what your thoughts are on that for other children.

Michelle: Sure. I think that there are definitely positives and I think there’s some negatives to labeling somebody. For me, it turned out to be a really good experience because I had a lot of misinformation from what my peers were telling me. I had a lot of peers that were saying a lot of unkind things about me. And I didn’t think that I was very smart. And here I am trying to work and I’m in school and everyone’s saying, “Well, try harder.” And I was trying hard and all I wanted to do was get everything and be able to understand and I couldn’t do that.

And my parents, thankfully they knew what the diagnosis was and they explained it to me. And when I heard that I have a learning disability and I learn differently. That was better than the information I was getting from my peers. It took me a while to accept that. For so many years, I wanted to run from that label. I didn’t want it to define me. And we didn’t talk a lot about disabilities. In fact, the time period I grew up in, having a disability was considered something you don’t want to talk about, like it’s a shameful secret. We didn’t have a lot of disability pride.

But I found that the more that I could explain it to people, the better off I was because people can’t see the disability. So having the label on it really made me be able to tell people what it is and it gave me an understanding and also gave me some ways to know how to help myself too. I knew that if I was going to go to college, I needed to have extended test time and tutoring and math was going to be hard. And the disadvantage of labeling that I’ve experienced is a lot of times people seeing what I can’t do and they think that you should be able to do anything.

Or if they see the label that I can’t do anything. I can remember I had to get tested for having a learning disability before I went to college and the psychiatrist who tested me, I had never been a great test taker. And saw the scores and said they were so low that I would most likely not go beyond community college. And they were asking me, “Do you want to write or what do you want to do someday?” And I put that down, “I’d like to write news reports.” And they said, “Well, based on your scores, this just is going to be beyond what you’re capable of doing.”

So the label can have a really negative thing a lot of times with professionals because we think that because somebody fits into this category, this is all they’re ever going to be able to do. When just because you have a label on you, you have a learning disability or autism or ADHD. You can do a lot of different things. And there are ways around that if that’s something that you want to do. And I just think sometimes when we do. Sometimes that’s the disadvantage of slapping a label on somebody is that people also start putting on a lot of the restrictions.

Amy: And limitations. And I think maybe sometimes I worry about children even putting labels and restrictions on themselves mostly probably because environmental, what they’re hearing from others. This is so, so fascinating. So I kind of want to dig into this a little bit more and just ask you from your experience then. What are some things, if we have a child that we’re working with or that is our own child that has some kind of learning disability or neurodivergence of some sort that’s impacting their lives. What are some words?

What are ways you would recommend that we speak that to them and that we talk about it and help them understand it in a way that empowers them, I feel maybe your parents did for you in a way, without kind of having some of those negative effects? Or even empower children to overcome the negative things that they’re maybe hearing from sources that aren’t us.

Michell: I think, well, the first thing is, focus on the things that your child is good at and notice that. That’s what my parents did with me. My dad read me stories every night when I was little. And he found a story about a dinosaur that I wrote when I was in second or third grade and said, “This is really good.” And that just gave me an immediate boost with my self-esteem because I didn’t think I was good at anything. I thought I just had no talent. I thought I was terrible at everything and that my life was always going to be hard because of my disability.

And when I heard that, “This is a good story”, that just encouraged me to write more stories. And it became a world that I could go to with my books and with my writing, especially when I was being bullied or other people were telling me just things about my disability. And it gave me a voice. So I think look for the child’s strengths, every child has something that they’re really good at. And encourage that and bring that up and say, “You may not be good at math, but you’re really good at reading. You’re really good at writing. I can see this. I can see what a good friend you are to somebody.” I mean, bringing up a lot of those things I think really helps.

I also think you don’t want to sugarcoat how hard it might be for somebody. We don’t want to say, “Yeah, you’re not going to have any issues or once you graduate you’re not going to have problems.” Because that’s really not the truth, but we don’t want to also hold somebody back either. We want to say, “You might have to encounter math, but this is some ways that we can do that. Let’s look in this information. Let’s, try to make a wise decision with that.”

I know with me, I had to make sure when I went to school I didn’t get involved with a lot of programs and involved in a lot of math or science. And when I went through them, I had to know what supports were available and I had to advocate for myself and to know what resources were there. So I think it’s just having that honest conversation but doing it in an uplifting gentle way as well.

Amy: I love that. There’s so much there that I just think is really valuable, almost in a way of acknowledging. I like that you spoke to not minimizing the struggle. I think that’s so hard when you’re trying to, but you can do almost anything you want to do. You’re trying to empower them to have this not hold them back, but at the same time, just that minimizing to them of the struggle, that’s very real. And so I love that thought. And being able to say something like, “Yeah, it comes with superpowers and super challenges.”

And is there a way we can kind of minimize the challenge, we have to pay attention to it and know it and understand it so we can find ways to work with it as part of your story. And then also as we work to minimize the negative impacts of it, what are the superpowers? I feel we all come with super powers. And I think specifically some of our kiddos that are struggling with disabilities or neurodivergence or whatever come with super powers that are amazing.

And if we can maximize this part and try to minimize the negative impacts by all the resources that we have and the things that we know about it and what we can do to plan for it or work with it, whatever. I don’t know, kind of maybe is an empowering message while still acknowledging what they are dealing with and giving them hopefully some power to do something with it and know how to work with it.

Michelle: Exactly. Yeah, it’s about, I feel so much more empowered when I am doing what I can do and what I love to do rather than what frustrates me and I’m not able to do. For example, I may not be able to drive because of my disability. But one thing I’ve found is, I notice details that other people miss when I sit in the passenger seat. I’ll be in the car with my husband and I’ll say, “Did you see that?” And he’ll be saying, “No, I’m focused on the road.” He is getting a little bit better about that.

But I can go and if I’m on a walk later on, I can go take a picture of a flower or something other else that I see in nature that’s really neat. And if I was in the car, I would not have gotten that view of that, and wouldn’t have been able to take that shot. And I have people that will tell me, “You bring out details in a flower that I would miss.” And that’s the super power.

And I mean, I could feel bad that I can’t drive, but I made sure with my planning that I lived in a place that I was able to walk or take the bus to and have a great husband who can take me to work and a nice co-worker and great friends and family that can take me places too. And I’m a happier, more positive person when I focus on what I can do, but if I focus on everything that I can’t do, I can be really negative. So I choose to focus on those things that I love doing and that I’m good at.

Amy: I love that. That’s so good. And there’s so much in there I think just choosing your focus. I’ve heard recently, focusing on the gain instead of the gap, the gap between where we want to be and where we are versus the gain or I don’t know. And I mean that’s used in a little bit different context, but I think it’s related where we kind of focus on what we have and the things we can do and our super powers instead of always focusing on the negative.

I think though that there is a reality to there being times like you spoke about in school where you’re having to do math classes to be able to get where you want to go, and the challenge that that is. So how do we empower our kids to, yes, try to spend a lot of focus on the things they can do, but then also help them face those challenges of having to work through some of the stuff that is so hard for them? Our kiddos that are struggling to learn how to read, and they need to learn how to read and how do we help them through that and encourage them through that even though it’s such a challenge?

Michelle: A lot of times what I tell them is that, for example, I had a student that’s really frustrated in typing. So I told him me, me and the teacher, all he has to do is his best when he does this one assignment. We just expect him because we can see how hard he’s trying and he’s just not getting it. And we say, “Alright, you have to do your best. You have to put forth the effort.” And that’s something my parents had to do with me.

I can remember studying for tests, bringing home homework and we had a lot of tearful sessions sometimes. I was frustrated, my family got frustrated at times. But my parents made me go and go to the class, even though I was frustrated and take a test, even though they knew I wasn’t going to do well. They made me go to school even though I was having a hard time with my peers. And they checked in with me and they made sure that they supported me with doing the work, with communicating with the school. But they didn’t expect me to get an A on everything.

They didn’t expect every class to work out well or every report card to do that. And a lot of people would question my parents saying, “Well, why are you happy that she got a C or she got a D or she didn’t do well or failed a class?” And my parents would say, “Well, she’s trying.” And the school educated them not to punish me on grades as long as I was trying. And that was the thing. We would just go forward and always had to put forth the effort, that’s all they expected me to do was to do my very best.

Amy: I think that message is so powerful in celebrating the effort and celebrating the challenge because the challenge is different. I have kiddos that just straight A’s. If they got an A minus on something, it’s this horrendous experience. And there’s suffering there. And we have to talk through it.

And I remember having a kiddo with this pretty significant diagnosis and challenge. And her challenge that day was going to school and taking a test that she knew she was going to fail. And she knew she was going to fail that test and she did not want to go. And so our conversation that morning was, “So we’re celebrating you going and doing it anyway, even though you know it’s not going to go well, you know it, and it’s going to be hard. We’re going to have to do whatever we have to do afterwards to fix it. But today, our job today is go and just take this test and fail this test and that is your big win for today is to go show up and do it even though you know it’s not going to go well.”

And she did and it was hard. It was so hard. And we went out for ice-cream afterwards. We celebrated this test failure. We’re like, “You went even though you knew you were going to fail, you went and you did it anyway and you did the best you could and you showed up for yourself that day.” And then, of course, we worked through that later. But I think yeah, celebrating effort and trying because that’s really what we have control over. We don’t always have control over how our brain works and the different things that it does, that don’t look quite the same as everybody else’s. And so I love that, that’s beautiful.

Michelle: Awesome.

Amy: Well, we are almost out of time, but do you have anything else you would want to share with our listeners, these parents and teachers that are working with kids on how we can support and be aware and support these kiddos that are maybe struggling with invisible disabilities? The things that maybe we can see or things that we can’t and how we help and support them through that.

Michelle: The thing that I would just say is not to give up on them. My parents never gave up on me and always supported me. My teachers didn’t give up on me. And I even got to talk to one of them a couple of years ago, that was my very first learning support teacher and she talked about how my parents worked together with her. And that one of my parents favorite teachers that they’d worked with because she really cared.

And I think it’s just not giving up on them and not boxing them and just to keep on encouraging them to do their best. And I always like to say that success doesn’t always come in the package we expect, but sometimes something even better.

Amy: That’s so beautiful and so true. Success doesn’t always come in the package we expect. It can be something beautiful and better. Thank you so much for coming and sharing your story with us and sharing some wisdom with us and things to think about. And I know I’ve learned some things, and I’m excited to kind of get to go and work through that and figure out next steps forward for myself. So thank you so much for that and thank you for sharing your journey.

Michelle: You’re welcome. Thank you so much for having me, it’s been a pleasure.

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Thank you for hanging out with me today for this fun chat on Raising Healthy Kid Brains. If you want to see more of what we’re doing to support kiddos and their amazing brains, come visit us on our website planningplaytime.com. See you next week.