Parenting Neurodiverse or Differently Wired Children

Episode Transcript

Dr. Nicole Beurkens:
Hi everyone, welcome to the show, I am Dr. Nicole, and on today’s episode, we’re talking about parenting neurodiverse or differently wired children.

Historically the focus has been on “fixing” a child with challenges, trying to get them to fit in with what’s considered normal, but the paradigm is changing for the better as we have come to understand that having a brain that operates differently can bring some real strength and that embracing differences and fostering each child’s uniqueness should be our primary goal.

To explore this with us today is parenting activist Debbie Reber, she’s a New York Times best-selling author, podcast host and speaker who moved her career in a more personal direction in 2016 when she founded TiLT Parenting, a top resource for parents like her who are raising differently wired children.

The TiLT Parenting Podcast has grown to be a top podcast in the iTunes Kids & Family category, with nearly 3 million downloads and a slate of guests that includes high-profile thought leaders across the parenting and education space. A certified Positive Discipline trainer and a regular contributor to Psychology Today and ADDitude Magazine, Debbie’s newest book is Differently Wired: Raising an Exceptional Child in a Conventional World. Debbie, it’s such a thrill to have you with us today.

Debbie Reber:
Thank you, I’m so happy to be here. 

Dr. Nicole Beurkens:
So let’s start at the beginning of TiLT parenting at least and talk about how that came about. What came about for you that you decided to create this?

Debbie Reber:
Well, I always like to say that this was not my original career plan, to be doing what I’m doing, but I’m someone who has always created what I needed. And for many years before I started TiLT, I used to write books for teen girls and I volunteered with teen girls because I was a recovering teen girl and tried to create what I wish I had access to when I was a teen. When I became a parent, I gave birth to a son, so that was already interesting because I was pretty sure I was having a girl after doing all that work. As he got older and we got into preschool and started going into early elementary, we got a lot of feedback and information combined with the parenting experience that led us to discover that he is neurologically atypical and going through that, trying to figure out how to navigate, finding the right school, figuring out how to support a child for who the kind of traditional parenting strategies don’t necessarily work was really challenging. It was overwhelming at times as a parent. There weren’t a lot of resources accessible, it was hard to figure out even when to start and also felt very isolating as a parent. So I created TiLT parenting years into this journey because it’s what I needed when I was earlier on and I was just kind of confronting the fact that this path was going to look different. 

Dr. Nicole Beurkens:
I think that’s so true for so many of us, the personal and the professional start to intersect, right? I love what you said about creating what you needed. I definitely can relate to that, and I think it’s a powerful motivator because not only is it figuring out these things for yourself, but also how to help other people and ultimately, really shorten the learning curve. And we’re talking 16? How old is your son now? 

Debbie Reber: 16.

Dr. Nicole Beurkens:
So 16 years ago. The vast amount of resources and things available now compared to then, you were really in the earlier days of having to figure it out yourself, but then making the things that you were discovering accessible to other people.

Debbie Reber:
Yeah. In fact, early on, the internet was around and Facebook was just starting to be a thing but early on, my lifeline was a Listserv out of the Bay Area, called The Parent Education Network. I wasn’t living in the Bay Area, but I found this just through some Google searches and that’s the first time I even heard parents sharing stories that I could relate to. So it was really challenging to just access and to even know where to start. And a lot of what existed also felt really icky. It kind of screamed “There’s something wrong with your family! There is a problem that you need to fix.” It didn’t really make we want to be a part of those communities.   

Dr. Nicole Beurkens:
I think that’s so true. I started teaching and working with kids back in the mid-90’s and there was nothing available. I remember looking. And that was before the internet was really a major thing, before we all had email and whatever, but I remember going to a library and there were two books and they were on severe disabilities, and I’m going “This doesn’t even speak to my experience with these kids”, and so I definitely can get that. I think it’s interesting in the last two decades, we’ve almost had this huge pendulum swing from next to nothing available to so many things out there and available that I find that a lot of parents now are sort of deer in the headlights with overwhelm. There are 700 different things, and “How do I know?” Do you see that with your parents too? 

Debbie Reber:
Yeah. It’s interesting because I do have a Facebook community that tends to attract parents who are really early on in their journey. And they’ll post often, “Alright, I’ve got a four-year-old. I just found out that he has this, this and this diagnosis. What do I do?”, and then they get 80 responses from people. So yes, there are pros and cons. We do have access to so much. It can be really hard to know how to even pare it down and how to take that little small step, which I think has to start with us, as opposed to the things we are doing for our kids. 

Dr. Nicole Beurkens:
I totally agree and I think one of the things that can be so alarming or uncomfortable for parents at the start of their journey of discovering that there are some challenges or things that they need to be thinking about is this idea of “Is there something wrong? Do I need to have some kind of prescripted thing to address here? Is this me? Is this something with my parenting? Is this something that if I just send my child to school…”

We’re so indoctrinated in this medical model of getting a diagnosis and then there is a prescribed treatment, right? So a parent comes into the group, he goes “My child got this diagnosis, tell me what the plan is for that.”

Seasoned parents are going “You thought there was a plan for this diagnosis. No.”

I think that is one of the reasons why community is so important around these issues because no two kids with these kinds of diagnosis or challenges are the same and there isn’t anyone prescriptive thing, and I think it can leave parents feeling really isolated as you said and needing that sense of community of just connecting with other parents who have been there, who are going through the same things because there is no one path. 

Debbie Reber:
Yeah. Believe me, if there was, I would have found it because I’ve been looking for it. I definitely was pursuing diagnoses because I thought they would tell me exactly what to do. And often with parents raising these kids, the behavior is the signal that there is something going on. But it is also behavior that can be extremely challenging when our kids are little. So we want solutions, we want the behavior to stop and we want people to tell us: “If you do this, this and this, then this will happen.” And it does not work that way, and that is one of the more painful things I have to share with parents, that this is a very long path that we’re walking down, there are no quick fixes. 

Dr. Nicole Beurkens:
Yeah, we talk about it with parents as it’s a marathon, not a sprint. And if you try to treat it like a sprint, you’re going to burn yourself out way before it’s going to be helpful. You have to treat it like a marathon. That’s a good segue, actually, to getting into this idea of what it means for a child to be differently wired. That’s a term you use, obviously in your work, in your writing. I think it’s a great descriptor. What do you mean by that? 

Debbie Reber:
I use that term to describe any child who has any sort of neurological difference. So it might be that they have a formal diagnosis of ADHD or Autism Spectrum, Anxiety, giftedness falls under that, twice-exceptional, sensory processing issues, learning disabilities. But it also might be kids who don’t have a diagnosis at all. These are just kids who, as a parent, we know are really sensitive, or they’re really wired to be intense or described as that “spirited” or “strong-willed” child. Just kind of the “more” kids. So I like this idea of a bigger umbrella to describe these neurovariances that also didn’t have a negative connotation associated or wasn’t a medicalized term.   

Dr. Nicole Beurkens:
Yeah, I love it because I am a very strange clinical psychologist in that labels and diagnoses are really not my main focus or interest. My main interest is understanding who the individual is, who the child is: Strengths, challenges, the whole mix of everything. And then looking at how to best support this person. And to me, a focus on clinical evaluations and giving diagnosis to that, it doesn’t in any way shape, or form capture who this child or this individual is. So I love that you use that “more” umbrella. Just that more inclusive and more positively focused term. I think it’s great. 

Debbie Reber:
Thanks. My son approves.

Dr. Nicole Beurkens:
Good, that’s also important. It’s interesting because I work with a lot of young adults in my clinic and several of them over the last few years have come across that terminology. Either it’s been things I’ve seen of yours or elsewhere, and they’ll come in and talk about how that really resonates. Oftentimes, more so with them, even than whatever assortment of labels, because the reality is if you bring your child to enough different practitioners, you will end up, usually, with a collection of labels because it is each clinician’s perspective and way that they understand these things is how they label kinds. So often, I’ll have these young adults who have been labelled with all these things, but what resonates with them is this idea of being differently-wired or neurodiverse, that is also a term that is often used in relation to this as well, right? 

Debbie Reber:
Yeah. 

Dr. Nicole Beurkens:
I want to talk about the parenting paradigm around this because this is huge. Most of our listeners for this show are parents, so I want to really delve into this because I think this is important and it will speak to people: So often, the idea has been “Oh, I need to figure out what’s wrong with my child so I can fix it. And that doesn’t just come from parents. That comes from the medical establishment, it comes from the mental health role, it comes from education, this idea of “Let’s figure out what’s wrong and let’s fix that.” But actually, I find that really sets parents and kids up for a lot of heartache and a lot of negativity and a lot of looking at things in a way that is not productive over time. So I’m curious about your thoughts on that, what paradigm we’ve been in and where you feel that needs to shift and go.

Debbie Reber:
I think the parenting paradigm that we’re currently in really is a medicalized model and really is based on parental guilt. It is based on fear, because we are afraid if we make the wrong choices, we’re going to screw our kids up or we wonder what their future is going to look like if we don’t go to this school and do x, y and z. It very much is about looking for quick fixes. So a part of what I’m trying to do is disrupt all of that and help parents realize that actually, your child is exactly who they’re meant to be. There is nothing wrong with them. Actually, society is what needs to change here. So as parents and caregivers and teachers and people who love these kids, the best thing that we can do is really work hard for more understanding and acceptance, and awareness of who these kids are. To look at them with a strengths-based model, to realize the potential that they have and that so often, the reason that they’re not being successful is that we’re trying to fit them into systems that weren’t designed for them.

Dr. Nicole Beurkens:
Yeah. I couldn’t agree more and nowhere do I see that as being more clear than in the realm of education, where we think about — And I’m a former educator, many of my dearest friends are educators and administrators and so I get that world. However, it is very much, for the vast majority of kids, an experience of trying to force this square peg into a round hole. Trying to make this system, this type of classroom or this type of curriculum fit the child, and I find that that creates such challenges and heartache. School is just a really tough thing because it is, as you said, this model of “You need to fit into what’s already established, as opposed to looking at how we can individualize, tailor, make school fit what’s going to work for this child.

Debbie Reber:
Yeah. It’s very much a model that — the traditional model, of course there are all kinds of alternative schools out there, but the vast majority of these kids are in schools that exacerbate their challenges because of the goal of classroom management, or just the way that learning is expected to be demonstrated or knowledge is demonstrated. So these kids, over time, especially when they’re younger and they don’t have the emotional regulation skills or the coping skills, they may react in ways that are considered bad behavior. So then they start to identify as bad kids or kids who are not smart, and they’ve got all this unrealized potential, these incredible strengths, these problem-solving skills, these fascinating ways of approaching learning that we miss out on. And these kids often fall through the cracks. 

Dr. Nicole Beurkens:
Yeah. And so often, the focus becomes on getting them to behave or getting them to look normal or like everybody in that setting, as opposed to looking at what is really going to help them grow and develop. What has been so clear to me now in 25 years of working with kids and families is that so much emphasis and focus, especially for parents with kids is on how to make it through the K-12 school years, and so much emphasis on “We have to get the homework done. They need to be in a regular class”, all of these things. And I get where that comes from, but what’s so interesting to me is in the big picture of kids’ lives and family life, what goes on between those K-12 years is just a drop in the bucket of what life is, and I see so many families so stressed out and overwhelmed and kids are so stressed out and overwhelmed. For what? To get a certain piece of paper at the end or to say you did this when it may or may not — likely doesn’t have any bearing on what comes next for them in life? So I’m such a big proponent of trying to help parents shift out of that one size fits all mindset, even if it’s what the rest of their kids did or what everybody else and their extended family has done and look at, especially from a schooling standpoint, what’s going to be healthy and workable and can help this child to thrive and to move forward in their life in a way that is meaningful for them because I’m really far from convinced that most of what goes on in traditional K-12 schooling meets that goal. 

Debbie Reber:
You are speaking my language. That’s a hard thing for parents to accept, especially during the pandemic. I just hear from parents all the time who are so stressed out about learning loss and about not attending Zoom classes and everyday, I’m like it doesn’t matter. Your relationship with your child is what matters right now. I often just say that school, for many of these kids, is just about getting through. It’s about survival because there is so much — it is possible for them, our job is to get them through this time with their sense of self-worth intact, which is not easy, and to help them really understand who they are and what they need to get what they want. Those goals are very counter to the way that they’re taught as a society, to value grades and accomplishments and extracurricular activities and resumés. So for me, I’m all about zooming out, focusing on the long-term goal for these kids, and often it has nothing to do with what’s going on in school. 

Dr. Nicole Beurkens:
So, so true. As you’re talking, it strikes me and I realize this too in a lot of working with families, that in order for that to happen, that’s a pretty deep, significant shift that parents need to make in their emotions around that, in their thinking around that, and that really has everything to do with when you have a child who comes into your life, who has these challenges, it requires a big shift in your thinking. We all have these visions in our heads before we have kids of what that’s going to be like. What our kids are going to be like, what they are going to grow up and do, what our family is going to be like. And when you have a child or more than one child who comes into your life who doesn’t fit that picture, there is a lot of adjusting there, and there is grieving. There is a whole lot that goes into that. I wonder if you can touch on that from your experience or the families that you work with. 

Debbie Reber:
I think that’s where all the work happens, because most of the pain that we as parents experience, I believe, is because of the disconnect between this expectation or vision we have and what’s actually happening.

There are many parents who don’t ever reconcile that. They fight the whole time, and that creates a lot of conflict in their families. It doesn’t feel good for them, it doesn’t feel good for their kids. 

But when we can start to lean into who our kids are and really do our deep inner work to question why we believe the things we believe. What do we make it mean? Whatever is happening in our family’s life, how are we letting fear of the unknowns of our child’s path, of how we will be perceived as parents, how are we letting that kind of run the show?

So I think when you’re raising these kids, it’s an opportunity for a lot of personal growth, should we choose to embrace it and we get to practice it every single day because we will always be confronted by — just look at your Facebook news feed and you will find, in a minute, 10 ways that you are screwing up as a parent because you’re forging your own path.

So it’s just this constant checking in on: What really matters?, Who is my child? What do they need to thrive? And what do we value as a family? And that is intentional work we have to do every day.

Dr. Nicole Beurkens:
I think that’s so true and with everything, in order to guide our children and help them develop things that we feel like are important for them we have to be a step ahead, right? So if we want our children to grow into embracing themselves, to trying new things, to advocating for themselves, to not comparing themselves to everybody else, then we need to take a good, hard look at what we’re modeling, and if we are able to do that, if we’re able to shine the light of the path there to show our kids how to do it, because I find that there can be a real disconnect there, right? “Don’t compare yourself to other people, you are who you are.” But what are we saying to ourselves? How much are we comparing on social media? So I think that deep, inner work is so, so important. 

Debbie Reber:
Yeah, and I love that you used the word “modeling” because that is all of it too. I’ve learned to just be very open about everything that I’m working on, my own perfectionistic tendencies or the way that I’m coping with my mental health right now in this moment, or when I get a setback or my own procrastination happens. I just model everything, I talk out loud about my experiments in what I’m doing and the work I’m doing because I want my son to know that’s how to live a good life, it’s to be constantly thinking about those things and thinking about how I can grow and learn from my experiences. 

Dr. Nicole Beurkens:
Absolutely. You talk, in your book, about this idea of tilts that parents can make, and in your podcast and all the work that you do, this idea of these tilts or these shifts that parents can make, and you talk about so many of them that I think are so helpful. One of the things that you talk about, this tilt that’s important for parents is to connect with other people, to really not stay isolated. Is that one of the first things that you feel parents on this journey really need to tap into?

Debbie Reber:
Yeah. I think, because we often do feel like outliers or that no one else really knows what we’re going through or how hard things are, that we can really withdraw or start to shut other people out. Some people need to be shut out because some people aren’t so helpful in the advice that they’ve got for us, but it is so important just to kind of recognize, wait a minute — when you start to realize how many other parents really are relating to your daily circumstances and the pain that you’re feeling, just to not feel alone just takes this whole layer off and it enables you to kind of be more open to the possibilities that can exist. So it is, I think, really important to connect. Luckily it’s easier than ever these days, even in the pandemic, it’s easier than ever to really find your people. 

Dr. Nicole Beurkens:
Well, I think the point that you brought up about some people needing to be cut out, we need to isolate ourselves from them, especially when it comes to family. Community is important, but a community with the right people, community who give you the support that you need, because unfortunately for many parents raising differently-wired kids, they don’t have a great support system within their extended family. They may have parents of their own who have strong opinions about “Well, if you just spanked him more/if you weren’t so soft on him/if you just did this or that” and so, I think that that can be a real challenge too and can also really cause parents to question — we talked about making some out of the box decisions or forging your own path based on what you feel is going to be best for your kids, some people, really, within their family systems do not have support around that, so it’s even more important for those parents to connect with and find community with people who can be a supportive sounding board and can rally around that. 

Debbie Reber:
Absolutely. And to not waste your time trying to convince people who will never get it, to get it. And a lot of us do that. We want the support of our close friends, we want our parents or relatives to really be there for us, and sometimes they can be and sometimes they are just not capable of that, especially for parents, these kids don’t fall far from the tree, right? So many of us as parents are also differently-wired. Then that can spark guilt for our own parents, right? Them recognizing, “Oh gosh, I didn’t… She’s doing such a better job than I did”, so it’s super-messy, but I think it’s important to set those clear boundaries, and also when you are disclosing, I’m all for reducing stigma by being open, and I think it’s important to not disclose to people who are going to use that in a way that could be painful to you or is going to make you feel like you’re being sucked dry. 

Dr. Nicole Beurkens:
Yeah, I think that’s important. You talk also about this tilt towards parenting from a place of possibility instead of a place of fear, which is so powerful, especially working with families, that just really speaks to a really core issue that people are facing, and it really does put people on two very different paths in terms of their own parenting experience, their family lives, outcomes for their child, people that really get stuck on this path of fear and lack and “This isn’t how it was supposed to be” versus people who embrace this path that they didn’t even know existed or that they were going to need to go down, but embrace this idea of possibility and I think it does really create two different experiences and outcomes. 

Debbie Reber:
Yeah, 100%. And that fear piece often shows up in schools and it’s the parents I hear from who just keep pushing. They either keep pushing to find the right school or they stay in the same school system that they know isn’t working because the thought of removing them and going their own way is just too terrifying to consider because even if the path is hard, we know what it looks like and that feels safer, so often gravitate towards that. And taking a leap in going your own path, it can be scary. But I have experienced this many times in my own life and I see it in other families that when you truly say, “You know what? I’m just going to choose the yes. I’m going to choose what feels like a yes, even if it’s terrifying, I’m going to lean into the discomfort” That is where all the good stuff is. Making that pivot can take a while for people, some people never do it and it’s our kids, ultimately, who pay the price for that.

Dr. Nicole Beurkens:
Yeah. It’s so true, especially around schools. What I always say to parents is: What’s the worst that’s going to happen? This new path, this new thing, this new idea that you have for your kids’ education isn’t going to go well. Guess what? The public school is always going to be there and they have to take you back. So I’m a big proponent of just making what feels like the one next right decision. If you decide to pull your id out of Zoom school that’s not working partway through the year and you say “We’re going to unschooling, homeschooling, no schooling,” whatever, great. And if you decide in the fall to send them back to whatever school is going to look like in the fall of 2021, fine, that’s fine too. We need to start making decisions, I think, based on what’s going on with the child, what’s working and not working, what’s the best thing we can do right now and not feel like we’re making the decision that’s going to determine every single schooling thing for the rest of their educational career or every single other part of their life. It’s like no. We’re just looking at what’s working or not working now and seeing what needs to shift here. 

Debbie Reber:
Yeah, I mean I always tell parents that there is no kind of “Alright, we’ve gotten to this K-8 school, we’ll just wipe our hands, we’re good to go. It does not work that way. And I suggest parents reevaluate at least once a year: Is this still working? Is it still the right fit for my kid? Is this still working for our family? And if it’s not, make that pivot. I mean we went through three schools, different schools, my son finished in different schools for K, first and second grade. The second grade was a public school and I was relieved. I was like “They can’t kick him out of this one.” But then I homeschooled for 6 years and every year we’d decide: Is this still working? Is it not working? Do we need to make changes? And then by the end of 8th grade, we were like, “Yeah, I think it’s time to go back to school.” So now my son is in his second year of high school. So right now, it’s working great. And we’ll make a change if and when we need to. 

Dr. Nicole Beurkens:
It’s just such a brilliant way of thinking about it and maybe it’s just because my original career in education makes me a little more confident in knowing that nothing that goes on in schools makes or breaks any child for the rest of their life. But even as a parent, myself, of four kids, we have made year by year very individualized decisions. My 4 kids have done everything from homeschooling to full-time online schooling to charter schooling to regular public school and everything in between, and they’ve come in and out of those things at different phases of their schooling, depending on what each of them needed at that time. And I find that so many parents are shocked about that, and I just really feel like we need to honor what’s going to serve each child best at each stage, and so I love what you said about making the decision for right now and reevaluating it once a year: Is this working? Is it not? And I think the same thing goes for therapies, for groups you might have kids involved with — We’re talking about school, but I think it goes for anything that we might have our kids engaged in. 

Debbie Reber:
Yeah, and that way of moving through the world is not typical, to use that word, so we will likely get pushback from people. We might feel jealous too. We might compare ourselves with other families who are able to get into that great K-8 school and be done with it and know that “All decisions have been made, I don’t have to think about this, we’ll just move down the road.” I understand that, but it gets easier. Our family sold the house and moved abroad to a country I had never even visited when my son was starting third grade. That was terrifying, but I’ve done things like that and they always end up being better than I could have ever imagined in the long run, so the more that you take those leaps and do these things which may feel risky, you build up that muscle and it also just starts to get easier and you start to realize the payoff. 

Dr. Nicole Beurkens:
Yeah. And the courage that it takes to parent in general, I mean let’s face it: Parenting is not for the faint of heart. And then when you have one or more kids with challenges or unique needs, it adds to that. And I’m always amazed at how many parents, moms especially, who will come in and feel like they are not up to the task, they can’t do it, they’re so afraid of operating outside the norm and I’m like, “Look, you have an amazing amount of courage within you, you wake up every day and parent these kids in your home.” That in and of itself, the parent of any kid — it’s an amazing act of courage to get up each morning and do what we do with our kids, we’re a lot stronger and more courageous than I think we realize, and I see that in so many parents, so I feel like one of the things that I want them to get out of their experience of working with me is that they tap into that for themselves, that they see that for themselves. That “Oh, I am stronger. I can make these decisions, I can do things I never thought I could or would have to.” Maybe this isn’t what I would have chosen if somebody had said to me 15 years ago, but this, I embrace this now and I can do this.” And there is empowerment there that I think is so critical that we don’t farm out responsibilities for these to professionals or educators, that we say “I can do this, I’m the most important person in my child’s life and I can do this.” and I think that sense and that empowerment is so key. 

Debbie Reber:
Yeah, I’m often just reminding parents that they’re exactly the parent that their child needs and by virtue of the fact that they’re listening to this conversation, that they listen to my podcast, that they show up on that Facebook group and ask those questions, they’re demonstrating why they are exactly the parent their child needs and they have what it takes and I think we are super tough on ourselves and we have ridiculous expectations for how we should show up, and I think parents of differently-wired kids maybe feel an added pressure because the stakes feel higher and it feels a little less clear about what we’re supposed to do, so we may put more pressure on ourselves. But parents that I get to interact with are the bravest, strongest, most hardworking, loving humans that I get to know. 

Dr. Nicole Beurkens:
I agree, whether they realize it or not, it’s true. Absolutely. As we’re wrapping up here, I want to make sure that people know where they can find you, your work, we mentioned the podcast, the book, where all those resources are housed because I know our listeners are going to want to check all that out. 

Debbie Reber:
So TiLT Parenting is kind of the main hub, tiltparenting.com and that’s where you can search through all 248+ episodes of my podcast. I have a TiLT Education page on there which I have a list of hundreds of schools that have been kind of crowdsourced from our parent community that work well for differently-wired students, and it’s broken down by state, so people can search. I do have this Facebook group I mentioned that’s called TiLT Together, and that is a group that’s really for parents to resource and support each other. And then my book is Differently Wired. If you go to tiltparenting.com you can download a free chapter. The first chapter that new subscribers get shares my whole story and you can kind of see what we went through to get where we are. 

Dr. Nicole Beurkens:
It’s a fantastic book, I highly encourage everybody to check that out, fabulous resources, and I think that you play such an important role coming from the parenting experience, the having been there, done that, doing it, living it, aiming to learn and to grow and to do that now in partnership with your son as he gets older, I think that perspective and the learning that you have to share and connect with people around is so powerful, so thank you for doing the work that you do and thank you for coming and sharing some time with us today. 

Debbie Reber:
Thank you so much, I loved this conversation. 

Dr. Nicole Beurkens:
And thanks, as always, to all of you for being here and for listening. We’ll catch you back here next week for our next episode of The Better Behavior show.