How To Sort Through The Right Autism Treatment And Support For Your Child

Episode Transcript

Dr. Nicole Beurkens: 

Hi everyone, welcome to the show. I’m Dr. Nicole, and on today’s episode, we’re focusing on Autism and related Disorders, and you’ll be hearing from the mother of a now adult son with ASD about their journey and how it changed her perspective on what’s really important when it comes to treatment and support for kids and adults with Autism Spectrum Disorder. So much of the autism treatment world is focused on behavioral training. And you know how I feel about that if you’ve listened to any previous episodes of the show. What we really need is a developmental understanding of what’s going on with kids who have these brain based issues, and a therapeutic approach that focuses on relationships and regulation. So I’m very excited to have my friend and colleague Sue Simmons on the show today to have this conversation.

Let me tell you a little bit about Sue. 

She is on a mission to change the way our society views and addresses autism. For decades, frazzled parents of autistic children have waited anxiously for treatment, feeling helpless and dependent. Sue proposes a new paradigm armed with training and knowledge: Not only are parents able to make dramatic changes in their children’s lives, but they are ideally suited to do so. Her refreshing approach puts parents back in the driver’s seat with a focus on building safe emotional relationships rather than only seeking compliance. The results are clear, real change is possible. And parents hold the key. Sue, you know that I could not agree with that more. Welcome to the show. Thank you for being here.

Sue Simmons:

Oh, my gosh, Nicole, thank you so much. I’m so excited to be here with you, and I can’t wait to have this juicy conversation.

Dr. Nicole Beurkens: 

It’s going to be great. I’ve been looking forward to it, because of course, you and I have known each other for a long time now, and I think it’s so important for families, especially if they are perhaps newer in the process of having a child with challenges, getting a diagnosis, figuring out what to do. It’s important for them to hear the stories like what you’re going to talk with us about today, and to just hear the lived experience of parents and families who have been down this path. So grateful that you’re willing to share, and let’s really start out by having you talk about your experience as a parent. Your son is now 24, so I’d love for you to just share with everybody sort of a summary of that journey for you with him.

Sue Simmons: 

Yeah, thank you. Well, it’s a tough story to tell, on many levels, but it’s a really important one. I wanted to be a mom. I knew I wanted to be a mom, because I wanted to do it in a way so that I could have the relationship with my children that I couldn’t have with my own mom. My mum was untreated bipolar, and so it was a pretty crazy upbringing. So I was all set to be the mom that I always dreamt I wanted to be. So my son was born, everything seemed to be going along just fine, and just a little bit after his third birthday, everything just went sideways. It almost felt to me like my child had been abducted, and another put in his place. And out of nowhere, he became very solitary. He did not want to do anything with me, we played together all the time. He was really into Hot Wheels, and so instead of making the track with me, he wanted to line them up, and I couldn’t get involved. I couldn’t insert myself in play. It became a massive power struggle every single time. I was petrified. What happened to my happy little boy? He was controlling, I was walking on eggshells in my own home. Now, I’ve heard the story hundreds of times from other moms, right? But at that time, I was still a fairly new mom, I was living in a in a new city, and I didn’t have a lot of friends in the area, I didn’t really have any support and my mom was certainly no help, and, of course, my then-husband, I’m separated now thought that it was something I was doing. Oh my gosh, it was like putting salt in a wound. It was horrible. So of course, I’m pretty resourceful and I was determined to figure out what was going on. So of course we started going for consults here and there, and I got told that I loved him too much, that I was spoiling him. It just went on and on, and finally, it took us two years to get a diagnosis. He wasn’t diagnosed until 2001, so we’re going back a number of years. 

I was like every day — I mean, I’m not a yeller by nature. I’m generally a very calm individual. Not so much, then let me tell you, I turned into what felt like a beast. It was the only thing I knew how to do. Of course, we know that this is what it’s like for parents that have not had or been given information that is accurate. So our house was madness. In fact, my then-husband, Jeff would come home and he would jokingly call me “Alice” at the end of the day, because I had mascara running down my face. Now there might be listeners who don’t remember Alice Cooper? But I sure do. So how do you think that made me feel at the end of the hard day, where I was tearing my hair out every moment? And he would come home and go, “Hey, Alice, how’s it going?” It’s tough, it was really tough. He was unable to be supportive, and I don’t fault him. Turns out he’s on the spectrum, and he didn’t get it. So we finally got our diagnosis from the Centre for Addiction and Mental Health in Toronto in 2001. When the psychologist said “autism”, it was such early days, that my son was the first diagnosed in our area. You could have knocked me over with a feather. I remember driving home from getting the diagnosis, and I called my mom. Why? I don’t know. But you know what she said to me? “Well, it’s not gonna kill him.” Very helpful. Thanks, Mom. Well, it almost did. And it almost did on more than one occasion. Yeah. It was a nightmare. And I remember at one point really questioning whether my life was worth living. Could I do this? Was I going to be the parent — Could I be the parent that I wanted to be, that I vowed to give both of my kids a good life? And I bloody well will, but back then, let me tell you: I was a mess. A girlfriend came over, she drove two hours to see me. She stood me in front of the mirror, and said, “Look at yourself, how can you possibly be a parent to these…”, at that time, I had my daughter too “…how can you be a parent to these two kids? Would you put them on a plane with a pilot in your condition? Come on, give your head a shake.” And that’s when I really realized, but you know what? The night before that — I don’t tell the story very often. We lived on a lake, and I paddled my canoe out to the middle of the lake in the dark without a life preserver, and I just sat there and I debated what | should do. That was such a turning point for me. I sat there and I sat there, and I could just tip this thing. I don’t know, but by the grace of God, I have no idea how it happened, but something told me: “You’re on this planet to do good work. And to be a mom. The mom you want to be”, so I paddled that canoe back in. My girlfriend came the next day, and I went “All right. All right. It’s got to start with me. If I don’t start looking after myself, my kids are going down the tubes, both of them.” So after that day, I really began to see things differently, and I started to realize that it had to start with my own self-care. I had to get my s.h.i.t. together and I had to start doing things for me before them because I became this vindictive, resentful marder person-thing. I was unrecognizable to myself.

Dr. Nicole Beurkens: 

I’m so appreciative of you sharing that though, because I know that there are so many parents listening who can relate to that. And we don’t talk about the realness of that enough, and people feel like “Oh, I’m the only one that feels that way.” And so for you to share that is so vulnerable and so powerful because it helps other people, moms in particular, who often are the ones bearing the majority of the burden of this, to know that “Wow, I am not alone. Wow, I have felt that way. And I’m not the only one.” And I think there’s a community around that that’s needed because you and I hear those stories from parents day in and day out when they get to know us enough to trust us and to be vulnerable and share those moments like you just said, of having to make a big decision about “Am I going to do this? Or am I not? And how is this going to go?” But people don’t talk about that, and in fact, I think that a lot of women in particular, they’re scared to even communicate that because there is so much shame and blame that society puts on women in particular, moms in particular, around “What do you mean you could ever feel that way about your kid?” or “What do you mean you would consider not being there for them?” Well, these are the very real things that come up, especially when you have a child who you just really feel like, “I don’t think I can do this. I don’t know how to get through another day, I don’t have the support or the resources or the tools to do this.” And it can just feel completely overwhelming, and so I’m so grateful to you for sharing your story in that way for people to just know that they’re not alone. 

Sue Simmons: 

Oh, my gosh, absolutely. And you’re so right, it’s like a taboo subject. One of the things that I think is so important as a woman to communicate, and now as a professional, obviously, that the way our system is working — if we reverse the roles, if we put men in the role of women now, do you think that they would have been okay with how they have been treated by our system? I don’t think so. I think there’s an equality piece here too, that really has not been touched on at all. But back to that vulnerability, you’re right. I have women in groups who can — and there are some amazing dads there, too, let’s be honest here, we need more of these incredible dads at the table. But it’s not until a woman feels safe enough to open up and think, “Oh my God, I feel the very same way”, and then it’s like the floodgates opens, and everyone — the tears start flowing, and they can finally feel validated. That their experience is exactly what so many other moms feel. And my heart goes out to these women who don’t feel like they have a place where they can feel safe. And Express. But there’s kind of a double edged sword there: You don’t want the whiny thing coming out either, because that’s counterproductive. Misery loves company. That’s a slippery slope.

Dr. Nicole Beurkens: 

For sure, and I want to be clear here because I think one of the things that can happen when a parent is vulnerable and expresses how they are really feeling about being the parent of a child with significant needs, and trying to manage all that, we now have this unfortunate situation where some parts of the neurodiversity community swoop in and say, “How horrible of you. How can you say that you’re feeling overwhelmed and terrible? Just love your child for who they are.” If you’re expressing that you’re frustrated or overwhelmed or upset, then that means you’re not accepting of your kid”, and nothing could be further from the truth. I want to be clear about that, because Sue, if there’s one thing I know about you, you are very much in the camp of embracing and celebrating neurodiversity, of celebrating both of your kids for who they are and how their brains were made and function, but that doesn’t mean that it isn’t also sometimes really overwhelming, frustrating, trying to be the parent to someone who has these challenges. I think we need to recognize that both of those things can and do exist at the same time. A parent expressing overwhelmed frustration, grieving has nothing to do with not embracing and honoring who their child is. And I’m curious about your thoughts on that because I see that happening more and more.

Sue Simmons: 

Yes, and I have experienced that too, where I post something on social media and I get all these comments back. You don’t understand, everyone’s entitled to their views and opinions, and that applies to everyone on our planet, right? But at the same time, our kids are suffering. This isn’t about changing who they are, it’s about cultivating their strengths and allowing their gifts to emerge, so that they can use those gifts in this world that needs them so desperately. I love to be able to see a parent feel more empowered, feel more connected with their child, realize that they are the right person to do the doing. And to just really experience the joy of seeing that sparkle really come to the surface, so that so that they can see that their child has all of the gifts that any other human child does, but be able to know that they were the ones who, lovingly, in baby steps with the most compassion, playfulness, and authenticity, bring out that little soul’s gifts. It’s magic. It feels like magic to me every time.

Dr. Nicole Beurkens: 

It is, and it took time for you to get there, right? Because I know when your child first gets diagnosed with autism, especially in 2001, nobody was swooping in to tell you right away about a relationship-based developmental approach. So can you talk a little bit what your experience was around the whole thing of “What do we do about this now?”, because I know that was quite a winding journey, and really propelled you personally and professionally to find something that works better than what is prescribed traditionally when a child gets this diagnosis, right?

Sue Simmons: 

Yes, exactly. That’s a good question. So we got the diagnosis, and I was not really given — I’ll tell you what I was given: I was given the name of a parent to connect with, and the name of a doctor who I eventually became very good friends with, but at that time was, of course, prescribing what we know to be a behavioral approach to autism. It just did not sit right with me. It’s like, this is my child, and you want me to what? And that’s going to do what? So here I am. I wanted to be a mom, I want to be a mom, I don’t want to be the dropper off of this child. So I didn’t go that route. What I did instead is I started a support group, and at that time, this was like the dawn of the internet back when the dinosaurs ruled… 

Dr. Nicole Beurkens: 

Some of us were around for that! 

Sue Simmons: 

It was crazy because I started collecting email addresses, and so I started this group. It was the first of its kind in our area. It’s still running now. I’m not involved with it, but at any road, we had parents coming in throngs because there wasn’t a place for them to go to feel understood, like we were already talking about. We had 40 people. It was in a church basement. So I’d go in, make the coffee, chair the meetings, did all that. And then one day, a parent came in with a brochure. It was a very thick brochure, and so I asked if I could have a look at it, and it was for a parent-based program that was developmentally focused. So it was all about understanding how the child’s neurology is different, and that that child experiences the world in a different way. They are frustrated, they’re overwhelmed, they’re misunderstood, and that parents are the best ones to learn how to parent this child. So I just grabbed that thing, and okay, I’m all over it. 

So that, as we know, was the Relationship Development Intervention Approach, which you and I were both trained in, way back, and that’s how we met. So I discovered the first Canadian to be certified lived very close to me, ironically, 20 minutes away. So I glommed on to this woman, I’m sure she saw me coming. It was like, “Oh, no!” So I said to my husband, “This is what we’re doing”, and the rest is history. There’s a lot of understanding to be done, because that’s the biggest issue, as I see it. It’s that parents are not taught this information. In fact, I don’t think I’ve ever met — maybe one parent who came to me with the understanding of how their child’s development was, for all intents and purposes, just thwarted, how that impacted their ability to parent their child. I mean, no one knows this stuff, so these poor parents out there are thinking, “It’s all my fault. I’m a bad mom”.

Dr. Nicole Beurkens: 

And that the solution is, as you said “What we prescribe you, 20-40 hours a week of applied behavior analysis work, guess what? You turn your child over to someone who has a high school diploma, maybe a college diploma, no training in child development and neurology, but training in behavioral compliance, and you turn your kid over to this person or this group of people and they’re going to “fix” your kid, and it’s so disempowering for parents. And you’re so right, it leaves a parent going, “Okay, well, clearly, I’m being told by the professionals that I have nothing to offer my child, I am not an important part of their life or development, and my role becomes making sure that the behavior techs and these other people who know better are managing my kid all the time.” Not only is it incredibly damaging for the child, and for those of you listening, if you missed the episode with Greg Santucci, where he and I really get into the big, big problems with Applied Behavior Analysis, ABA and other types of approaches similar to that, go back and listen to that, but for the purpose of our conversation here, Sue, what really becomes problematic, I think there, is it’s completely disempowering to parents, and it says “You have nothing to offer your child, you are not part of this equation.” And here’s the thing. It leaves them with no understanding and no skills when it comes to living with their child and being a parent to their child, which is insane.

Sue Simmons:

I know! I did a Facebook Live once and I had a visual of A and then B. So A is this family of sick people, this was what I drew, and there are arrows pointing at the child. About 15 different arrows: Your child needs this, this, this, this, this, your child has a set of problems to be fixed, and so the mother is wearing the chauffeur hat, and the dad is standing over at the sideline going like “What?”, hopefully that’s changing. So the mother — the whole family’s being stressed to the nines, the siblings are feeling resentful, of course, the mom is feeling more guilt, more guilt, and even more guilt. “Am I doing the right thing? Am I doing enough of it?” And then B, the different, the sort of “after” picture is first of all: The mom feels understood, validated, her stress is acknowledged and addressed, and it’s quite likely that she may have experienced PTSD, because we know — I think it’s somewhere in the vicinity of 20% or thereabouts, that percentage of moms experience PTSD. We know their children have been traumatized. There’s no question. These kids have vulnerable nervous systems at the best of times. They are unable to regulate their emotions, they’re overwhelmed. We know their outward behavior is a manifestation of their internal experience. We know now that parents are the most important people in their child’s lives, no matter what. And we know now the research is saying that for any child to have quality of life, to have the best life possible, they need to have that emotionally safe and connected relationship with at least one parent and caregiver. Now, tell me how many children out there who have neurodevelopmental challenges have that? That’s the scary thing. What happens to these kids? 

Dr. Nicole Beurkens: 

Well, because we’re not approaching them and these families in a way that prioritizes that, and that, I think, is the big missed opportunity. Treatment becomes about other people doing things with your kid and not about helping the family to be able to regulate, to function well, to thrive, and that’s really where all of the important positive benefits happen. And we’re seeing the research come out about that, for sure. But the fact that, as you said, the vast majority of parents aren’t even being told that, “Hey, it’s going to be important for you to understand and learn about what is going on with your child’s brain, what’s going on beneath these behaviors, to have some skills for this. And even in some of the parent training classes and things that are offered, the focus is very much on a reward and punishment basis. “Put together these charts and get these rewards.” It’s crazy, right? You just “Oh, my gosh, I have to manage 17 charts and stickers all day!” 

Sue Simmons: 

You need project management training to be able to stay on top of reward, consequence, reward, reward. It’s too much, and it’s not realistic. Let’s not go there, we just know they don’t work. 

Dr. Nicole Beurkens: 

That’s right. So let’s talk a bit about what does work because I’ve always thought it’s so strange, and right at the time, when you were going through this as a parent with your son, was the time I was going through this professionally, having been in the field of working with kids with autism for several years, and going “Most of this doesn’t make sense to me. And I don’t want to get more training in these other approaches. There’s got to be some other way”, which is when I found Relationship Development Intervention from the professional standpoint when you were discovering it from a personal standpoint. But what struck me so much about that, I had been trained through my training in education and child development about child development, child brain development and how that process unfolds. And what was so weird to me, when I came to the world of autism was, there was no discussion or even awareness or prioritization of child development for these kids. And I’m like, “But these are kids too!” If anything, for a child with a vulnerable neurological system, we should be even more focused on that developmental process. And yet that has been largely absent, but of course, you found approaches and ways to prioritize that. So let’s talk about what are some of the things that you think, from a developmental perspective, that parents need to understand or that need to be done differently?

Sue Simmons:

Good question. So I think the first thing is the understanding piece. That we know our children’s development has been halted at a certain point. I think now, this word “neuroplasticity” is everywhere. I remember when I was in Houston doing training, and my colleagues and I were passing around books. There was a book that came out at that time, it was called “Change Your Brain, Change Your Life”, and we were all sitting there going, “Oh, my God, the brain can change! The brain can change! So how do we do this?” Well, we have to give our children different experiences than the ones they’re getting. So we have to understand that their nervous system —  Thanks to Dr. Steven Porges and the Polyvagal Theory, now we understand that so much of what autism really looks like, really matches up with autonomic dysfunction in the nervous system, right? So one of the things that I am so crazy about right now is looking at mom’s stress, understanding her natural behavioral style because that informs how she’s going to show up with her children when she’s under stress. So helping her understand how her mind and body work, and that’s where Emotional Freedom Techniques comes in for me, because it’s just a phenomenal, trauma-informed tool that allows me to help her calm her nervous system, and understand how her mind works, understand how what she’s thinking is going to inform how she’s going to show up. Because if we see this child as being a little pill, and trying to turn the screw, then they’re going to show up as that beast that I used to show up as. But once we understand that a child is suffering, and that they are a little human being, not a Martian, they are a little human being who needs and deserves compassion and love, no matter what, no matter what has happened. This child is not having a good time here, trying to turn their parents’ life upside down. They need compassion. So when we can come together, and just be together without trying to get something from our child, to sort of embrace what the child’s interests are, and engage with that as a starting point. To learn to do things together like gardening or things that we can do. Now, parents need help with this, right? Because if it was that easy, they’d already be doing it. 

And then on the other side, understanding that child’s nervous system. I am in love with the Safe and Sound protocol, developed by Dr. Steven Porges, and Integrated Listening Systems, unyte. I have seen incredible things happen with a child’s brain and body being able to relax, even a little bit, it makes such a tremendous difference. Their social engagement system is able to come online. Then we’ve got all the gut issues, digestive challenges, all of those things, too. So I look at it from the mom’s stress and where she is, the child’s stress and where they are. What are the child’s strengths? Let’s look at this from a strength-based perspective, and celebrate what that child is good at, celebrate what they’re interested in. I talked about one family I’m thinking about right now, whose child could work for NASA in like, five years, and he’s six! No, they’re not all the same. We know that everyone on this planet is unique and deserves to be celebrated for who they are. So we’ve got to look at everything differently, we’ve got to question everything. We’ve got to support the caregivers, and give them the tools and the self-understanding that they need, in order to be able to manage their own emotions and to have support so that they can say, “Oh, my gosh, today is a really bad day.” And you know what? That’s okay. You’re allowed to have bad days. This is not about being the perfect mom, there’s no such thing in the first place. Right? 

Dr. Nicole Beurkens: 

Yeah. I think what this really gets out from a developmental perspective that most people know, just because they’ve been a child, and now are an adult, but that hasn’t been explicitly pointed out to them, is that children develop through their relationships with other people. Child brain development happens through what we call, and what the field of child development calls Guided Participation. The parent being a supportive, but sturdy leader and guide to the child, and what we know happens in Autism and related kinds of disorders and special needs in general, that guided participation relationship gets disrupted, where the child isn’t being an easy to lead participant. And as the parent, you just go, “Oh my gosh, I don’t know how to do this.” It totally throws off your compass of how to engage with kids. And I think that’s so beautifully illustrated in the story that you told about your own experience early on as a mom. You were like, “I’m going to be the best one, I’m going to spend all this time with my kid”, and you were doing this, and suddenly the compass got thrown off, and you were like, “I’m doing all these things to try to guide and engage my child, and my child is going wooo, totally over.” And it’s like a compass just spins and you go, “I don’t know how to engage and help this child participate with me and with life.” So I think that’s what we’re really talking about, right? That the key is helping parents learn how to manage their side of that in a way that then allows kids to be guided and to engage in the things that move their brain development forward.

Sue Simmons:

Exactly, and you said something there that I think bears repeating. One of the things that is very complicated but so simple at the same time: When we show up differently, our child shows up differently in response, and that’s the beginning of being able to lead our child or guide our child’s thinking, emotional, social and cognitive development. So once parents start to see that “If I show up with compassion instead of screaming and yelling, wow, what a difference that makes.” Boom, it’s so quick and things can turn around surprisingly quickly. And what does that tell you? What does it tell you? Right? That this child wants to be loved, wants to love. I mean this is how human beings are made, right? We need relationships in our lives. Without having that one emotionally connected relationship, that child is as good as a kite in the air without — tethered, they’re not grounded. They can’t be in the world without being able to relate to other people, and it’s the parents’ gift to be able to bring that out in their child. I see myself as a facilitator of that process. Just baby steps, baby steps, it’s all about baby steps. It’s so empowering for moms to realize that “I am the right person to be doing this all along. I thought I was the worst mom ever. But now I see I have a role in my child’s life. And I want to be able to see that child’s life blossom, so that when I’m not here, I feel that I’ve done everything I could, and that I have confidence in my child’s ability to zig and zag in the world.” Now, that takes a lot of — it’s not a quick fix. But as you know, our Dr. G says, it’s a marathon, not a sprint. It couldn’t be farther from the truth. But is it worth it? Whoa, you bet.

Dr. Nicole Beurkens:

That’s right. Absolutely. I think taking that marathon perspective is so valuable, because it takes the pressure off from one day to the next of having to get everything “fixed” or managed right away. There’s going to be a process. And I want to I want to touch on something just to be clear, because I think one of the things that gets misunderstood when we’re talking about child development-focused and parent-focused intervention, there’s a misunderstanding on the part of some people that we’re blaming parents for the child’s issues, that “Oh, you’re doing parent-focused intervention. Well, you’re saying that…” Nothing could be further from the truth. I think that’s worth touching on, because that is unfortunately a stigma around this that you and I have both heard.

Sue Simmons:

Yes, absolutely. In 2017, I did a very informal survey. So I want to make sure I emphasize the word “informal”, because I was creating a program. So I interviewed over 100 moms, and for most of those moms, the children had already done their allotment of therapy. So “How are you doing? How are you feeling? Your child’s had their therapy. What’s the outcome?” “It didn’t do anything.” Or I shouldn’t say that, many parents said, “This is better, this is better. But as a mom, I just feel like the underbelly of a snake,” But it’s not their fault. That’s the thing, right? If you think, “Oh, this therapy is going to — once we get this over with, we are good to go”, that’s the farthest thing from the truth. And these moms internalized it because “Well, that was supposed to work, and it didn’t. So it’s got to be me.” It’s not your fault. If you’re a mom listening here, it is not your fault. That couldn’t be farther from the truth, and you need to know that. 

Dr. Nicole Beurkens:

Yeah. And I think that when we’re talking about focusing on parents as the key to intervention, it’s not because there’s blame, it’s because you hold the key. We know that child brain development happens via the relationships with parents and primary caregivers. So the focus is on you as the parents, not because anything is your fault, but because you do hold an important key. And so I really try to frame it for people in terms of empowerment, of “Look, this is such a wonderful thing, that you don’t need to be dependent on other people to do something with your child to make things better. You can develop the ability to do this.” And when parents can learn how to understand and guide their child in those more productive ways, everybody has a better life. Not just the child, but the entire family: The parents, the siblings, everybody, and that’s really the beautiful part of that.

Sue Simmons:

Absolutely. It’s so true. And I see, just last week having a really amazing conversation with a couple, at home, both parents work. Two young children, one on the spectrum, maybe a year apart. So you can imagine these kids are at each other all the time. The parents are trying to work. Life is mayhem. Well, a couple of months — three months in, different picture altogether. Different picture all together. And even some of this, some of the friction between the two little guys, has calmed way down. So everybody is happier. And then there’s the sort of economic aspect of it. Holy cow, let’s talk about how we can throw money away. I want to make a point that all people that work in this field want to do good things. So it’s so important to say that because I don’t want anyone to think “Oh, she’s bashing us.” It’s not that. You’re doing the best — you’re doing the work you want to be doing with the information you have. You’re trying to do your best, but yeah, it truly does change the whole family dynamics. I see the pride in the faces of parents who have — it’s taking a leap of faith. It really is. And there’s a lot of fear involved for parents. I’m thinking of one of my clients, Sam, just an amazing woman who had a very disciplinarian upbringing, so of course she’s going to parent the way she was parented. That’s all we know. Right? It took time, but she began to realize how much she was sabotaging herself through her thinking, and more and more and more and more yelling is not going to make things better. And so she benefited tremendously from EFT. They’ve since graduated, I worked myself out of a job just to see them — like sure they’re going to have bad days. That’s inevitable. That’s life. But at the same time, Sam, in her mind, has a little rundown of “Okay, what can I be doing here? How am I looking at this?” Because how we perceive something is how we address it. And so it’s just been life-changing for her to know — She said that on a couple of Facebook Lives with me, “I never thought I could do this”, because she herself suffered from mental health challenges, as, let’s be honest, as so many moms do. So that goes back to that vulnerability piece. These moms need to know that they’re not alone. And Sam was just like any other mom. She had so much self loathing. It took a lot of fortitude for her to say, “Yeah, okay, I’m doing this.” But today, it’s a different family. And it just — oh my God, what a feeling to know that this can happen. 

Dr. Nicole Beurkens:

I love it. As we’re getting ready to wrap up here, I would love for you just to briefly share with everybody — we talked about the early part of your journey with your son and him getting diagnosed, and how you picked a different treatment path. I’d love for you, If you’re willing, just to share a little bit about what he’s up to today. 

Sue Simmons:

Oh, I love this part. Well. There were many valleys and many ups and many downs, and there were many times, I didn’t know whether he would still be here today. He struggled with depression, a very difficult depression and suicidal ideations, suicide attempts. However, in his late teens, we did do a little bit of work with you, which was unbelievably fabulous. And he had a therapist that got him into mindfulness. So today, he is just finishing up his college degree, Visual Communications and Graphic Design. He’s doing an internship, and he’s in a committed relationship. He has bad days too. And that that’s always going to be there, it’s just part of being alive and a human being. But for the most part, he is a lovely human being. And I’m so proud to say that I had a hand in supporting his growth and development to where he is today. He is just an exceptional human being.

Dr. Nicole Beurkens:

He is, and you touched on his accomplishments, and it just makes me teary. But I think what’s the most remarkable is what an incredibly attuned, sensitive, lovely, thoughtful young man he is, and that all the other things aside, to me as a parent and thinking about your son, and everybody who I work with, whether or not they go on to college, whether or not they even are ever able to have employment or be out on their own or whatever, all of that aside, to see kids grow up to be lovely, kind, thoughtful, engaged human beings, what a remarkable thing. And your son is just a beautiful example of that. 

Sue Simmons:

Thank you. I tell you, I look at him. Everyday, I look at him and think “I’m so proud of who you are.” It took a lot of fortitude for him too. Of course. But it can be done. And you’re right about that. Not everyone is going to be able to go on and work for NASA or do whatever, but so many can. We just have to expect more.

Dr. Nicole Beurkens:

And to focus on helping each of them become the best version of themselves that they can be, and that that’s so possible. And so, I so appreciate you just sharing your story, and I know that he gives you permission to talk about him, so I just wanted to say that too, that we’re talking about him with his knowledge, the fact that we’re sharing about him and I appreciate him being willing to have us really share it all. This has been just such a beautiful, wonderful, and important conversation, and I want to make sure that people know where they can find out more about the work that you are doing, the resources and things that you have available. 

Sue Simmons:

Yes. So www.equinoxfamilyconsulting.com is the website. And I just want to say super fast: The name of the business, Equinox, I chose because I want to give children on the spectrum an equal opportunity for quality of life as their neuro-typical peers, and so that speaks to the Equinox when there’s an equal length of time, and of light and dark, I should say. So equinoxfamilyconsulting.com. There are tons and tons and tons of resources on the website. We also have a Facebook group. It’s primarily made of moms. It’s called Empowered Parents Navigating Autism. And so we have, I don’t know, 1500 moms in the group. It’s been a little less active with the pandemic, I think we can figure out why. But if you’re a mom and you want to be around others who are wanting to have the best life for their child and family, then we would love to have you in our group. I do Facebook lives on Thursday nights most weeks. So please connect with me and I love to talk to you about what I do and how I can help. 

 Dr. Nicole Beurkens:

Awesome. And we’ll put those links in the show notes, too, for those of you who are interested, you can go grab those off the website or go check those out. Lots of wonderful resources and supports and things available on Sue’s website, so I encourage you to check that out. Sue, thank you so much for taking the time to be with us today, to share your story, to share what you’re doing. I know it was really valuable for everybody listening, so thank you. 

Sue Simmons:

Oh, thank you, Nicole. It’s been such a treat.

Dr. Nicole Beurkens:

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