How To Support The Development Of Children With Down Syndrome So They Can Thrive

Episode Transcript

Dr. Nicole Beurkens 

Hi everyone, welcome to the show. I’m Dr. Nicole, and on today’s episode, we are talking about the importance of a neurodevelopmental and holistic approach to supporting the development of children who may have cognitive impairments and developmental delays, but really for any child who’s experiencing issues in any part of their development. We are going to explore this specifically through the lens of children diagnosed with Down Syndrome because my guest, Sandy Bodeau is the mother of an amazing little girl with Down Syndrome. She’s going to share her journey as Mara’s Mom, the lessons that she’s learned, and why she is a fierce advocate for children and families around these kinds of diagnoses and treatment.

So let me tell you a little bit about Sandy. She’s an author, advocate, immigrant, TV personality and blogger. She’s the creative director of the parenting blog, Mara the Wonder Girl. Sandy is a contributing writer for Today Parents and appears on Univision. Her work has been recognized by Vanity Fair, Lucky Magazine and The Today Show, as an influencer on Instagram and Facebook, Sandy posts daily in both English and Spanish. When Sandy learned that her daughter Mara would be born with Down Syndrome, she knew that together, she and Mara would show the world how special and powerful each individual can be. Mara quickly showed her individual strength and perseverance, as well as her magnetic personality. It was on her first birthday that Sandy launched her website, marathewondergirl.com. The website provides resources for all parents, particularly those who have children with special needs to help them reach their full potential. She released her first book, The Light After Loss in December 2019, it follows her journey to have her second child and the four miscarriages she had along the way. Sandy, it’s such a joy to have you here, there’s so much for us to talk about. Welcome to the show.

Sandy Bodeau 

Thank you so much. I’m so excited to be here.

Dr. Nicole Beurkens 

You and I have been fans of each other now on Instagram for quite a while. We have collaborated on things on social media, and it’s long been time to have you on the show. There’s so many directions we can take this conversation because of your experiences and the knowledge that you have gained along the way, but let’s start with having you share your story around how you got involved in all of this because it really was when you found out that your daughter had Down Syndrome, correct?

Sandy Bodeau 

Absolutely, yes, I really didn’t know much about Down Syndrome or any cognitive delay before my daughter. She was diagnosed when I was 11 weeks pregnant. It was really early, because as you said, I have had miscarriages before, so I was very, very consoled by my wonderful obstetrician. And when we found out we were obviously very shocked, but I really, really, quickly learned that we were afraid because we didn’t have information. It has become my sentence that I tell all clients that information is power. Inform yourself. Once you know what you are facing, all those fears — not all those fears, but many of the fears go away because you understand what is in front of you, how you can help your child. So I got to work on myself really, really fast. I was in shock and a little bit of — really worried about what it meant for us, but as quickly as — I can remember seeing my husband down and telling him, listen, we have this one piece of information about this child right now. We can use in it two ways: We can use it to just be terrified and not do anything about it, or we can use it to our advantage, and we can use these months to educate ourselves and learn what it really means and what we can do for her to live a wonderful life, which is what she’s living now.

Dr. Nicole Beurkens 

That’s right. And such a beautiful way of approaching that, because unfortunately, what often happens when parents are given that diagnosis, especially earlier on in a pregnancy, they aren’t given a lot of information. And what most parents in that situation have shared with me over the years is that the information and the prognosis that they are given is pretty devastating, is framed in a very negative way, and that does feel very scary, very overwhelming. And I don’t know if that was your experience, but that’s what a lot of parents have shared, “Wow, we really weren’t given any kind of a reason to have hope or a positive outlook.” And in fact, one of the really difficult things that has gone on particularly in the realm of Down Syndrome is so many parents opting to terminate pregnancies when they find out about that diagnosis, and a lot of it is out of fear, and because they are not given a full range of information. At least that’s my perspective, I’d love to hear your thoughts on that.

Sandy Bodeau 

Unfortunately, your perspective is very, very accurate. My experience was not as horrible as other experiences that I have heard, but it wasn’t positive. It really wasn’t positive, I left with a diagnosis and one pamphlet that was one page, that was all the information that I was given, along with many, many statistics that were very scary. We have to remember, for those of us that received the diagnosis during pregnancy, that you are pregnant. So you are at a very vulnerable time of your life to begin with, so when you are sitting down at the doctor’s office, and you are hearing about heart issues, respiratory issues, digestive issues, and in these big numbers, and nobody really tells you that your child may be born perfectly healthy, which was the case with my daughter. Throughout the pregnancy, nobody told me, in spite of every result, being positive. No defect was found in her heart anywhere, and nobody told me “You know what? Maybe she’s going to be 100% healthy.” So for me, one big part of my message when a pregnant mom comes to me is: First of all, statistics are there. They have a meaning. But it depends on how you look at it, because when somebody tells you that 40% of children with Down Syndrome have a heart defect, it means that 60% of them don’t have it. And that’s what I told one of the doctors once I was feeling much better, and I was really okay with her having Down Syndrome, I told her that. I said, “Don’t you think that this will be presented better, in a more neutral way?” I don’t even mean to be super optimistic, because I know that you are dealing with a serious situation, but in a more neutral way, the negativity around the diagnosis experience is really devastating. And as a result, it happens, what you just mentioned, that many people terminate out of fear without appropriate information, which is heartbreaking.

Dr. Nicole Beurkens 

Yeah, absolutely. And I think there’s the piece about the potential for the medical and physiological issues, but then there’s also the piece around sort of this assumption or this implicit message, even if physicians and other healthcare practitioners don’t say it out loud, there’s this assumption that somehow, if a child has a developmental disorder, whether it’s diagnosed in utero, or later on in childhood, that somehow that child is “less than”, right? They are not going to be successful. They are not going to be able to go to school, normally like other kids. They are not going to be able to be independent, and all of these really negative attitudes, and that’s scary, too. And also not necessarily accurate. And whose decision is it whether a child is successful or not? What that even means, what it means to go to school or graduate. There’s all these sort of hidden assumptions in that that are really problematic, and impact not only parents who find out early on that their child maybe has a diagnosis like Down Syndrome, but even parents later on who find out that their child has autism or some other neurodevelopmental issue, and there’s sort of this implication that, “Oh, how tragic. Your child is less than. They are never going to do all of these things.” And I see how heavily that weighs on parents, and really how that sets parents and kids up from the start to just live in fear and have all of these negative ideas, and I wonder if you see that as well.

Sandy Bodeau 

Oh, my goodness, absolutely. You are stealing so many of the things I want to say! But it is true, and most importantly, like you said: Who measures what makes your life worth living? What’s the measurement for that? It means something completely different for you, for me. It made me as a mother — and I have a son that is older than Mara, my son Lennox, who is neurotypical, and it made me wonder so much about even the hopes and all the dreams that I had for him. Who says that that’s the idea? Who says that that’s what you want to strive as a mother to provide for your child? What makes that perfect, versus if Mara doesn’t get there? Why is her life less beautiful or less wonderful? Because now I look at her. Her life is amazing. I look back on all the fears that I had, and I don’t even know what I was so afraid of, because her life is wonderful and I have learned so much about the meaning of — Those standards are absolutely meaningless. They were put there, I don’t know by who, but you are going to live your life whichever way you want, and it’s going to be beautiful if you want it to be, regardless of what measure is out there for you that you are supposed to achieve.

Dr. Nicole Beurkens 

I love how you said that your experience with her and thinking about what success really means, and the ideas that we have as parents about what our children should become, how that really turned that on its head for you and got you thinking about that even with your neurotypical son. And I know so many parents have had the same experience. It’s like, “Oh, wait a second. I wasn’t even consciously aware of all of my own expectations or demands for my kids.” But when you have a child with a diagnosis like this, it suddenly gives an opportunity, I think, as a parent to look at that in all the ways, for all of our children to go “Wait a second, who is it up to, to decide? And who decided that this was normal and this wasn’t? Or who decided that I get to be in charge of what my kids become?”, and start looking at them as unique individuals, yeah?

Sandy Bodeau 

Absolutely. It has really changed me as a mother, like you said. I had all these things with my son. I am myself very academically inclined, so I want him to be a nerd, and I wanted him to be a reader and to be the best in school and all of that. And now I’m super relaxed about it. I remember listening to your episode on unschooling, and now I’m like, “Wow, we need to look into this, this is amazing.” And I would have never thought in a million years that I would think that way. But now I have a completely different perspective as to what I hope for my children. And it has nothing to do with what society may think is ideal.

Dr. Nicole Beurkens 

Beautiful. I want to get into, sort of along this idea of things that you were told, and what parents are told, not just in terms of what to expect, but also the standard of treatment and things like that. I want to get into your exploration of a different way of approaching this, because you have really educated yourself around this path, focused on neurodevelopment, focused on brain plasticity, focused on helping your daughter be able to make the brain connections to do things that it’s just sort of assumed in standard treatment. “Oh, no, that’s not what we do.” And I think there’s a lot specifically around Down Syndrome and other neurodevelopmental issues that parents don’t even know about. You are told one thing, “Oh, this is as far as it’s going to go”, or “This is the treatment that we do for this.” And you have found this whole other realm of things to look at that. So I’d love to have you talk about your journey. How was it that you got on this path of exploring all of these more innovative neurodevelopmental things? Because I know that’s not what the early intervention PT’s, OT’s, speech therapists, psychologists — I know that’s not what you were being told by mainstream providers. So talk a bit about that journey.

Sandy Bodeau 

Well, in general, I wasn’t even tolerating anything even close to that when I was pregnant and Mara’s diagnosis was laid out, they talked a lot about early intervention, occupational therapy, physical therapy, but everything is approached from “But you have to get ready for her to not to progress, you have to get ready for her to do this late. She’ll be a late walker, She’ll be a late talker. Everything is going to be late. And there’s nothing you can do other than — yeah, we will work on it. And she’ll eventually get there, but anything’s going to happen.” And that didn’t really resonate with me. I was like, “Really? Why?” Because I am an extremely logical person. So I was like, “Well, you have to tell me, why?” And it can’t only be because she has Down Syndrome.” Okay. She has Down Syndrome, but how does this impact my daughter? How does this impact her brain? How does this impact her metabolism? And now you can find the answers. I’m not one that sits without answers. I just can’t do it. I mean, my mom will tell you, I was the child who was like “Why? Why? Why?”, which has served me well later in life. So actually, neurodevelopment found me, because as somebody who really likes to learn things and everything, when I was first pregnant with Mara, a lady recommended me a book called “How To Teach Your Baby How To Read”. I didn’t have Mara’s diagnosis yet. And I bought it, I put it to the side and I didn’t read it for a few months. And then when I was about six months pregnant with Mara, I said, “Well I’m going to read this book now, and I’m going to use these last few months of my pregnancy to teach Lennox how to read.” And that’s how I found neurodevelopment. This book was written by a physical therapist who worked with a brain surgeon, and together, they explored and did this amazing research on neurodevelopment. They were pioneers here in the US as to how to rewire the brain and how they treated, specifically, children with brain injuries. And they have this really interesting anecdote as to how they came to the realization, because he was a physical therapist, so he was when he was doing the traditional things that physical therapists do. And he says that one day, they were helping a man who had a stroke. And his children came, and they were people that were not very highly educated. So they asked him, “Can you please tell us what happened to our dad, but please, explain it really simply because we are not going to understand it if you tell us as a doctor.” So he said, “Well, your father had an injury to the brain, and we are trying to help him recover function in the legs and mobility.” And they asked him, “If my father had an injury to the brain, why are you massaging his legs?” And that was an aha moment for them, that they were not treating the cause of the injury. And to me, I was pregnant and reading this book, and I was like, “Oh, my God”, I got chills, I’m telling you. I was like, “Oh, my God, this is what we are going to do with Mara. This is what I will do with her, this is the approach we are going to take, we are going to figure out what is happening with her brain, and we are going to create new connections and new pathways of information.” And I got to work as soon as — she was six weeks old, when we started.

Dr. Nicole Beurkens 

So great, that whole brain body connection, and this idea that human brains, even when there’s serious injuries, like in the case of a traumatic brain injury, can rewire themselves. But it’s about knowing how to stimulate the formation of those connections. And so much of what we do in traditional therapy is passive, and doesn’t focus on the connections in the brain. And I think this is a good time to raise something that you had on a post recently. You had a post about crawling, you had a post about bracing kids’ legs, both of which I think are really relevant to this conversation, and that many parents listening can relate to it — maybe if your child didn’t have this specific thing, something like this, where okay, your child is having a problem with their gait or their mobility, and so we are going to put braces on to make that easier for them. But I want you to talk about the questions that you had around: Wait a second, is that really getting to the root of the problem? Because it’s not. So talk a bit about those kinds of things,

Sandy Bodeau 

It is absolutely not. This is the same with crawling in the case of children with Down Syndrome who tend to have low muscle tone. And I became really passionate about talking about low muscle tone, because I feel people don’t fully understand what it is. Oftentimes is mistaken for strength. My daughter is tremendously strong, and precisely because she’s very strong, having low muscle tone makes it a little bit more challenging to engage those muscles, which is what happens when a person has low muscle tone, the muscle relaxes. It’s more, much more than for you or for me, and it takes much more effort to engage the muscle. So it’s not really about strength. It is about muscle control. And that’s what happens, that’s why motor skills are impacted. It happens in the feet, and my daughter is having it in the hip area, which obviously doesn’t help for walking or for crawling. But as you were very well saying, there is a way to stimulate the brain and to figure out what part of the brain regulates muscle tone, and through stimulating work and stimulating that part of the brain, that muscle tone will improve and improve and improve, as was the case with my daughter. My daughter, when she started walking, I remember — even though I knew so much already about muscle tone, her feet, she had really low tone in the ankle area. But I already knew and I was absolutely never going to put braces on her feet because her feet were fine. The signal that the brain was sending to her feet was not optimal. So what we did is we worked on the cerebellum, and I don’t want to get super technical, it’s always a little bit intimidating for me to get super technical, but I do know what I’m talking about. So we worked on cerebellum stimulation, and never, never for a day had to use any device on her feet. And today, at two years old, she walks two miles a day. She is trying to run, she walks amazingly. And it breaks my heart when a mom comes in and tells me something, because many moms, in their heart, they know they don’t want to do it. So they come in and say, “I don’t want to put that there.” So I say, you know what? This is my request for you: Go to that doctor and have them explain to you what is wrong with your child’s feet. Have them explain the cause. If they cannot explain the cause to you, and it doesn’t relate to the treatment, you have your answer, you have your answer. And I always tell them: You’ve got to know the cause. Do not be afraid to say, “What is the cause of the problem?” Because if anyone explains to you that low tone is related to the brain, any of us would agree that putting something on the foot is not going to fix it correctly, right?

Dr. Nicole Beurkens 

That’s right. It becomes a band aid, which is so much of what we do in traditional treatment in any of the therapeutic disciplines. A lot of it for these types of things is a band aid. It’s like “Oh, you have low tone, you have weakness: Here. Let’s give you some stability by putting braces.” But to your point, tone, whether we are talking about low tone in a child with Down Syndrome, or let’s say you have a child with cerebral palsy, who has high tone, way too much tone and spasticity, tone is a neurological process. It’s regulated by the brain. So braces are a band aid. If we want to get to the root of it and have a child whose brain and body are able to regulate that tone so they can move appropriately, that’s a job up here with building brain-body connection. And with crawling too, right? I loved what you said in your post. You said they told you “Well, she just won’t crawl. Kids with Down Syndrome don’t crawl.” I have heard that about kids with autism, kids with lots of neurodevelopmental things, CP, all of these issues. It’s like “Oh, well, they won’t crawl, that’s okay.” And they start focusing on the walking. But let’s talk about why a developmental milestone like crawling is so important.

Sandy Bodeau 

I tell every single mom: It cannot be skipped for a child with Down Syndrome. It is terrible for a child with Down syndrome to skip crawling, and all the many, many things that are really challenging for a child with Down Syndrome that will impact them later in life. Fine motor skills will be tremendously impacted. Speech will be tremendously impacted. The benefits crawling has for hearing, which is also a big issue in children with Down Syndrome. Vision, crawling helps with the vision. There’s a large percentage of children with Down Syndrome which have [inaudible 0:23:12 dyspraxia?] , again treated in a way that it should not be treated and could be corrected with a lot of problems. Mara is famous for her very long walks and for her very fast crawling. Because we did crawling races around the house daily from the minute she started crawling at eight months, and then she started walking. And my son, Lennox, was with her and he was wonderful. And he has been so incredibly great for her. I know that she started walking way earlier than the pediatrician predicted. Her pediatrician said “I know if anybody’s going to prove me wrong, it’s going to be her.”

Dr. Nicole Beurkens 

I love it

Sandy Bodeau 

I always tell her — she doesn’t tell you anymore. But when she was younger, she used to be like “Yeah, I think it’s going to happen at three years.” Three years? God knows she’s not going to be walking at three. And we worked really, really hard on crawling. I’m a huge advocate of crawling because it just simply cannot be skipped. How it impacts midbrain function for a child with Down Syndrome, it just cannot be skipped. I tell every single mother. Many moms send me messages on Instagram every single day. And sometimes they will tell me, “My kid is two and never crawled.” I say you know what? It’s never too late. Make them crawl. Make them crawl if they are three. Make them crawl if they are four, if they are ten. I don’t care, but they have to be able to build those connections to the brain.

Dr. Nicole Beurkens 

And I would say the same for any child who’s struggling with any aspect of their development, no matter what the age. Often parents will come in if their child’s having visual processing problems or problems regulating their attention or hyperactivity, or coordination, even bedwetting, things like that. These all have roots in those early movement, brain-body connection milestones. There’s a reason why human babies crawl, and actual crawl. Sometimes parents will say, “Well, my child crawled”, and I’m like, “Well, show me. Was it more of an army crawl or a scooting?” We are talking about a true cross pattern crawl, hands and knees crawl, and that is not just about a baby starting to be mobile, and getting ready to walk. That’s how people think of it right? “Oh, that’s before they walk.” That is building so many important connections in the brain for all of those things you talked about: For listening comprehension, for visual processing, for social interaction, for different kinds of more sophisticated movement patterns. So when kids skip those foundations, often there are going to be problems down the line, and part of the therapeutic process is going back and giving them an opportunity to build those connections.

Sandy Bodeau 

Absolutely. I’m so glad you said that, because I forgot to mention, my son, Lennox, was an Army crawler, and he never did the cross patterning. So when I learned all of this, and I was going to do it with Mara, I was like “Of course he is going to do it. He’s very tall, so in addition to not having crawled and being very tall, he had lots of coordination problems. And I was always thinking, “Wow, I wonder if it is because he’s so tall. Why does he bump into things all the time?” It got to a point that I knew there was something there, more than “Oh, he doesn’t pay attention”, and the change in the 10 months that he was crawling with Mara is incredible. He had a lot of sensory issues in his hands. He couldn’t touch anything that was any different texture or anything. All those things have gone away. And so all those connections were not there for him. So I have seen it firsthand, that’s why in addition to everything that I have learned through my research, and having seen it in Mara, I have seen my own child not having done it and what happened when he did it for a really intensive — because we were really intensive about it, for 10 months, and the changes and the improvement that I have seen.

Dr. Nicole Beurkens 

I’m so glad you shared that because that’s so relevant for many of the parents listening, whether it’s a child who’s been identified as having some issues, or just other children in the family. And I think that’s the amazing thing, right? As a parent, when you learn about things to help one of your kids, there’s always ways that it impacts — actually the entire family gets benefit from it. And so I’d love to have you talk about some other things, either in your own experience, or you have worked with and communicated with so many parents in similar circumstances. What are some of the other things that you find that frequently come up? Either things that parents are told that are unhelpful or are not true, or things that you had to learn about and discover for yourself that “Wait a second. No, this is actually…” Talk about some of those other things.

Sandy Bodeau 

One of the things that I find very often is that the answer to everything when your child has Down Syndrome, if you have a concern, the answer is always “Well, that’s Down syndrome.” There’s no deeper explanation, you just kind of have to take it for what it is. Nobody really says “Well, but we could look into this”, or “We could do this other thing”, or “I have learned about this treatment/test.” Everything is because of Down Syndrome. It worries me a lot, because I don’t think that everybody is like me, that I always have to get to the very depth of the question. Many moms go to their doctor thinking that this person has all the answers. So when you ask a question, and the answer to it, for example, is “Your kid is not going to crawl because they have low tone and they have Down Syndrome,” and you just go home and don’t do anything to help your child crawl, you just put your trust in a person, a huge amount of trust in a person that is not giving you accurate information, which is really concerning. I always say ask your why’s, you just can’t leave, and the answer to everything is not because of Down Syndrome. They have to explain to you: What part of — how Down Syndrome impacts your child, whether it’s the brain, the metabolism, how it impacts it, and then you decide what you can do about it. And related to that, the biggest one or one of the biggest things that I see is thyroid function. The thyroid issues that, if you have Down Syndrome, are going to have, I have learned, unfortunately, that a thyroid issue in a person with Down Syndrome cannot be addressed as a thyroid issue for a neurotypical person that doesn’t have an extra copy of the chromosome 21. So the same thing I tell everybody: You need a full panel, because TSH and T4 do not give you a full picture of how Down Syndrome impacts thyroid function. It doesn’t. So when you take those numbers, those two numbers and you don’t have a full picture and you accept treatment for something that you haven’t looked completely into, you are not addressing the issue.

Dr. Nicole Beurkens 

I’m so glad you raised that because that’s a big one, and we know that proper thyroid function is hugely important during those early developmental years. When a child does not have adequate thyroid function, it has a tremendous impact on every part of their development, and so I’m really, really glad you raised that because it is something, unfortunately, that too many parents aren’t given the information about. And by the time they discover it, perhaps years later, they have lost all of that time, and some of that damage then becomes permanent. What happens when a child has a really under-active thyroid that isn’t addressed? You can’t get that time back. So that’s really big. And this makes me think about — I’m so glad you raised this because I know that all of our parents listening who have a child, maybe who’s been diagnosed as autistic, or even other kinds of neurodevelopmental issues, even ADHD, genetic disorders, epilepsy, any of these kinds of things, you are right, that’s so often the answer to every problem. It’s “Well, they are autistic, that’s what happens/Well, they have Down Syndrome/Well, they have cerebral palsy/Well, they have epilepsy/ADHD.” And, to me, this is a real ethical human rights and social justice issue, because we have so many children who then grow up to be adults who have very treatable things going on, that no one has bothered to look into, because it’s assumed that well, this behavior is just because they are autistic, or this issue is just because they have Down Syndrome. And meanwhile, these children have the same realm of things that can go on that any other child has. Physiologically they may have chronic constipation, impaction, they may be struggling with chronic sinus infections, they may have pain somewhere. There are treatable things going on that don’t get evaluated and treated because everybody just goes “Well these are the kinds of behaviors and things that these kids do.” And to me, that is such a human rights issue.

Sandy Bodeau 

It is, absolutely, and I’m so glad you said that, because it is true: The standard of care cannot be lowered, just because your child has a thing that, okay, we put the label, now we move on. Now, we don’t have to worry about anything else. When I go to the pediatrician, I notice. I hope she doesn’t listen to this! Or it would be wonderful if she does, because she is so… I don’t know what word to use, but she is wonderful, I will say. I will say that I have been lucky in the sense that she respects very much that I am very well informed, and there’s always a reason for my request. There are many parents that encounter complete opposition to further testing, which hasn’t been my case, my pediatrician always listens to me. Perhaps she wouldn’t take that approach if I want to further test the thyroid, these numbers, I don’t know, I want to further look into this. My daughter has something with a white blood cell count, and saying “Well, it’s because of Down Syndrome”, and I said, No, no, no, no. We are figuring out what’s happening here, and once we know what’s happening, then we can decide if this is nothing to worry about. But we are not going to take that answer. But you have to, like I said, it is needed to do further testing for a person with Down Syndrome. And you can’t just go in and say “Oh, no we are not even worried about the thyroid, or we are not going to worry about why the tone in the hip is very, very low.” If I were to take my son who is neurotypical to the doctor, and those same symptoms were present, they would be moving up and down to figure out the cause. Why is it not the case with a person with a diagnosed condition?

Dr. Nicole Beurkens 

So, so true, and I see kids — I’m thinking about several situations. I’m thinking about a patient that we have in our clinic currently, with Down Syndrome, who went years now into young adulthood with some pretty severe self-injurious behavior that everybody along the way just said, “Well these are the behavior problems that come along with this kind of intellectual impairment.” Meanwhile, we discover a mouth full of infected cavities that nobody had treated, terrible pain from headaches, things that physiologically — this young woman was banging her head and screaming all the time and doing all these things, not because she had behavior problems because of her Down Syndrome, but because she had serious physiological and medical issues that no one bothered to thoroughly investigate because she had Down Syndrome, and we see that a lot in the children and adults that we treat who are autistic, especially if they also have cognitive impairment and can’t clearly articulate or communicate, “I’m having pain”, or “This terrible thing happened to me at school.” That’s another piece of it, traumas and things that they experience and that they can’t communicate, but that impacts their behavior, that impacts everything. And we have to get curious and advocate. And that’s the piece I love that you do so well for your own daughter, the advocating, right? The “No, no, I’m going to need a better answer than that. No, I’m going to need to look further”, but also that you take that advocacy to a community and a global level by helping other parents to know what they need to know and how to advocate. And I’m curious how that process has been for you, because you have gone public now with this for a bit. You have been in this for a bit. And I’m sure there are some pros and cons to that, but I’m just curious, in your work with other parents, in doing this kind of advocacy, what are you finding around that?

Sandy Bodeau 

What I’m finding is that people, really in their heart of hearts, are not happy with those answers. So they are looking for hope. The majority of people, the majority of moms that come to me — there are moms from Kenya, a mom from Ghana that sends me messages, all over Europe, all over South America, where the stigma associated with Down Syndrome is horrible. But at the end of the day, you are looking at your child, and you want your child to do well, and you want them to have a beautiful life. So the messages that I get are mainly people looking for hope. I’m really proud that they find it in the community that I have created. It’s a passion of mine to show families that the life that they have been presented with doesn’t have to be the life that their child is going to have. And they are now seeing it, because when I started doing this, Mara was really little, and I was less vocal about it when she was little because I wanted to see for myself how far I could go, and if I was going to get really good results in order to really advocate strongly for what I am doing. Now I see it every day. She’s doing amazing. And I think she’s going to continue to do amazing. And I tell everybody: If you want, this is going to be your child. And for me, I take a big, big, big responsibility in that. Because that mom changing that mindset is going to change their child’s life. It’s a big responsibility. I get chills saying it, but it is one of the biggest privileges of my life, what I am doing right now, which I think: Wow, if I get this mom to get out of that fear, and put aside the prejudice and put aside the negativity that she has been given — if I can get her to really focus on her child, to really start asking the questions that she needs to ask, and to get a team of people working with her for her kids to thrive, this child is going to have a completely different life, and how incredible it is to get to do that for one person.

Dr. Nicole Beurkens 

Beautiful and I also love — because you are bilingual, that you provide every post, every resource in Spanish as well. In fact, a lot of your stuff is in Spanish. As I was looking online, even preparing for us to talk today, a lot of your videos are totally in Spanish, which I think is amazing because that piece needs to be brought into the conversation too. When we talk about the equity and the advocacy and the social justice pieces of this, not only are the things that you and I are talking about in the realm of neurodevelopmental focus and thinking outside the box, not only are those unique in the world of all of these diagnoses, but making that information accessible to people who are not primarily English speaking to bring in, quite frankly, non-white, non-English speaking people into the conversation, that’s critical. And I feel like you are playing such an important role in that way as well.

Sandy Bodeau 

I truly hope so. And to me, I learn through sharing my journey, like I was mentioning before. In Central and South America, that hope, what I am providing is very, very needed. There’s such stigma. Very vague information. So the website that we created was precisely because I felt like, okay, how do I create a very mom-friendly, very family-friendly, not intimidating, and it’s just from a mom to another mom, simplified information? The one website that I would have liked to find, which has inspiring stories and it has lots of resources, all the research that I do is shared there, what has worked for us, I talk to experts, I really, really hope that I can tag you to have information there because it’d be so impactful to share. I always say you speak — every single one of your posts speaks to my heart because we feel the same way, we feel that we really need to find the cause of things in order to properly help our children. So that website is read all over the world, it’s wonderful, we are really proud of it. And we do it bilingually because I want to reach as many families as possible. I wish I could do it in more languages.

Dr. Nicole Beurkens 

It’s so true and it’s so needed, and I love seeing it. I want to make sure that all of our listeners know where to find you online. What is the website? Talk about your social media. Where can people get more of you, and more of Mara, and more of the great things that you are doing in the world?

Sandy Bodeau 

They can find me on Instagram @sandythewondermom. And the only reason why I’m the Wonder Mom is because Mara is the Wonder Girl. She gave me the title. It’s not like I am calling myself that. And then we created a website in honor of her life and in honor of her first birthday called marathewondergirl.com There’s a lot of information. Every time somebody finds me on Instagram, I send them to the website because we have poured our hearts, my husband and I, because it’s a labor of love that we do together on our website, and we are really, really proud of the information we are providing to families.

Dr. Nicole Beurkens 

It’s amazing. Your website has a wealth of resources. And again, for those of you listening, even if you don’t have a child diagnosed with Down Syndrome, so much of the information and the support available on Sandy’s site is really relevant and uplifting. So marathewondergirl.com, and on Instagram @sandythewondermom. You will love following her. Please go give her love on Instagram. And your book, as well, can people get that on Amazon?

Sandy Bodeau 

They can absolutely get an Amazon, The Light After Loss. I wrote it pregnant with Mara. I didn’t have anything else to do. I was training myself in neurodevelopment. I also wrote The Light After Loss, it can be found on Amazon. I think it’s a beautiful book, full of hope, full of life lessons. It’s raw because pregnancy loss is not is not something easy to go through, but I hear from my readers that it’s really helpful and that it just helps you go through a very traumatic time of your life. But it shows you that you can you can get to the other side and learn beautiful, beautiful lessons along the way.

Dr. Nicole Beurkens 

Well, thank you, Sandy, for being such a light in the world, for bringing so much hope to all of the moms, the kids, the families who are walking this path. Really, really appreciate the work that you and your husband are doing, and very much appreciate you spending the time here today chatting with all of us. So thank you.

Sandy Bodeau 

Thank you so much for having me. It was an honor.

Dr. Nicole Beurkens 

And thanks, as always, to all of you for being here and for listening. We will catch you back here next time.