What do you do when the doctors tell you this is as much engagement as you will get from your child and he will never walk? Do you accept the doctor’s report or do you find another way?
My guest, Dr. Chloe Webber, experienced this and decided not to accept that her son would never walk. Chloe shares her story with me and reminds me that as mother’s we have an intuition that always knows best for our child.
In this episode, Chloe and have a conversation about being an advocate for your child, no matter the cost. Chloe shares:
- Her response when the doctor told her “this is as much engagement as you will get from Remy and he will never walk.”
- How non-medical professionals approach their child’s diagnosis
- How she taught people around her about her son’s diagnosis and dealt with their judgment
- How to have a conversation with your child about kids with special needs without being awkward.
Chloe is a Doctor of Acupuncture and Chinese medicine, founder and CEO of Radical Roots herbs, and a solo mama to a 7-year-old boy named Remy. Chloe’s son was diagnosed with a rare and debilitating genetic disorder at 2.5 and the two of them have been on a wild ride searching for answers and finding joy in unexpected places
Connect with Chloe
- Website: http://www.radicalrootsherbs.com
- Use the promo code REALMOMS for 20% off your order.
- Instagram: https://www.instagram.com/radicalrootsherbs/
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This episode is sponsored by Dermaclara
Transcript of this episode
Real Happy Mom 0:04
Are you listening to the real one podcast? The weekly forecast for busy working moms to get inspiration and practical tips for this journey? My name is Toni-Ann, and you are listening to Episode 164. Well, hey there, and welcome back to another episode of The Real Happy mom Podcast. I’m super pumped to have you back. If this is your first time listening, welcome, I am beyond happy that you decided to join me today. And in particular with this episode with my guests, Chloe. Now, if you are a returning listener, hey, you picked a good one to come and listen to today. Because, yeah, my guest today is is giving us all the tea here and helping us out when it comes to advocating for our child. My guest today is Chloe, whoever she is going to be sharing a little bit of her story about her son, and their journey with his diagnosis. And also with actually kind of defying the odds here, because she has a son that has been diagnosed with a rare and debilitating genetic disorder at two and a half and was able to go through a journey to find some answers. And now her son is doing better, so much better than what the doctors were initially telling her. Now, in this episode, Chloe is going to be sharing, like I said a little bit about her story. Also, some of the things that she wished she could have done differently. And I know this is going to be a really good one for you if you are dealing with a child with special needs. Because even if you don’t have a child special needs, I think as moms, we need to do better about this one thing that she shares. And then also she talks about how we can have some conversations that may be a little bit uncomfortable when your child sees another child that isn’t quite like them. So how can you have those conversations? How can you start asking the questions so that you can get more informed about some of these rare genetic disorders? And also how can you help your child understand that all kids are different than we also need to include them in things too, as well. So super excited about this episode. I love the conversation that I had with Chloe, and I cannot wait for you to listen to it. But before we jump into that, please make sure that you go over to Real happy mom comm slash community and join the Facebook group community there. I love having this community. I know that we have been sharing some information on Trello here been doing monthly trainings on Trello just showing you how to use this project management tool to organize, manage, simplify your life, at home and at work. So if this is something that you need, if you are looking for some other moms to connect with, this is the place for you to be so join me over in the real happy mom community on Facebook by going over to Real happy mom.com/community. Now that we have that out of the way, let’s go ahead and jump on into this week’s episode with Chloe.
Real Happy Mom 3:12
Awesome, awesome. So we have a very special guest, we have Dr. Cullowhee on today. I am particularly excited about this one just because we are going to be having a conversation about something that we haven’t not talked about on the podcast. So super pumped about today’s conversation and super pumped to have you here, Chloe. So welcome to the podcast.
Thank you so much. It’s such an honor to be here.
Real Happy Mom 3:36
Yes. Now before we jump into our topic for today, I just wanted you to share a little bit about you and what you do.
Well, so I am a doctor of Chinese medicine. I am also a solo mama of a child with a very rare genetic disorder called STX. BP one. And I am on a mission to help advocate for families to live healthier, happier lives based on in particular herbal medicine, but sort of the wisdom that is Chinese medicine overall.
Real Happy Mom 4:06
Awesome, awesome. Yes. And I was just telling Chloe before we actually hit record that I kind of gave up on my dermatologist and I was really looking forward to actually finding the Chinese doctor in China. But that was right before COVID happened. So I had to put that on pause. But I have Chloe here. So she is helping me out or at least referring me to the right person, but not necessarily wanting to talk about me and my skin issues. That is what we’re here for today. I actually wanted to talk to you about your child in particular about advocating for your child no matter what the cost is. And this is something that I really was excited to talk to you about just because I know that every child is a little bit different. Sometimes I feel like as mothers we have that intuition, we have that instinct and we know things and a lot of times we know more Been what some of the professionals or experts are trying to tell us? Yeah, there’s some things that yes, they they know more than us. But we have that instinct in that knowing with us. So I just want to do to share a little bit about what was your response when doctors told you that this is as much engagement as you’ll get from your son, and he’ll never be able to walk, like, walk us through like how you’ve been got to that point. And then like, what your response was?
Well, it’s been, it’s been a very interesting journey and a lot of evolution for me personally, as well as for me, but just to touch back on what you said, for anybody who’s advocating for their child, if you are a mom, like you, you built this human in your belly, there is absolutely never going to be any person who understands your child better than you do. So like if your doctor ever pushes back on anything that you have to say, find another doctor that’s going to listen to you look for other tests, do whatever it is, because that’s something that honestly just absolutely drives me crazy. I feel like there’s a massive amount of like gaslighting of mothers in terms of the health of our children, when there’s a lot of reasons to be concerned. I mean, there’s an absolute epidemic of neurodevelopmental disorders in our children. Like I think one out of 32 kids now has autism, one out of nine has severe food allergy, one out of six has ADD, I mean, it’s just like, it’s absolutely insane. So if you as a mom do have that gut instinct, I really want to encourage everybody listen, to follow through on that. And like find the doctors that’s gonna listen to you whether it’s Western, Eastern, anywhere in between. That being said, for my son, it was a very interesting journey. So we didn’t know, when he was born, there’s no indication that he was any different than any other child. And then as months went on, you know, I started noticing things I would Google, I’d be like, he’s not really smiling, but like, everything I’d see was that he was just kind of at the end of the bell shaped curve. So I didn’t worry too much about it. I’m pretty chill. So I was like, alright, it’s just a chill, chill, little kid, it’s fine. But then at like, 910 months, he was referred to early intervention. And then at 12 months, he was referred to genetics to neurology. And then for the next year and a half, he was doing like 20 hours of early intervention therapies a week, you know, I had left my job and had been doing another 20 hours with him every week. And it wasn’t actually until he was about two and a half that he got his genetic diagnosis. And at that point, he was maybe just starting to crawl at two and a half, maybe it might have been later than that is around that time. But, um, so we knew that there was something very significant going on, but when we got his diagnosis, which is this, you know, genetic mutation that’s so rare that it’s named after the gene that’s mutated. You know, they, they sat me down, and the doctor was horrible. And he was basically like, you know, your son’s gonna have moderate to severe intellectual disabilities. Parkinsonian, like tremors and he was like, yeah, like he has those tremors, right? Like, the guy was, like, proud of himself, he figured it out. And he’s like, likely epilepsy and blah, blah, blah. And he went through this whole list. And, you know, as a mom, obviously, like, I sat there and like, even just thinking of that day just tears me up inside. But you know, but I also had had the training that I had in Chinese medicine. And I also knew that I’ve had hundreds of patients come to me and tell me that their doctors didn’t believe what they had going on was going on that their doctors couldn’t find an answer through the tests that they were going through, you know, I’d already studied epigenetics and nutritional therapy and all sorts of different ways to support the brain. So to me, I sort of gathered myself together, and I, you know, I went through a whole hot mess of a situation for myself, but like I, you know, I pulled myself back together, and I was like, you know, first things first, the minimum this child needs and deserves, is a happy mom. So like, I can’t fall apart, because he needs me more than anything. And so lo mom, like he needs to see his mom be happy, he can’t see his mom hysterically crying on the floor all day, every day, which is clearly what I wanted to be doing. But then be you know, it’s like, there are so many opportunities for healing in this world that are outside of the typical western paradigm. And, you know, I’m gonna do everything that I possibly can to support him and give him those opportunities to heal. But love him and appreciate him for exactly who he is, and whatever that trajectory is for him. So I’m pretty stubborn. So that that also works well for both of us.
Real Happy Mom 9:38
Nice. Yeah, no, when you were saying all of that, I was just like, Yeah, I just don’t know how, even just for myself, how would be able to comprehend and be able to digest all that information from the doctors because I’ll be honest with you as a dentist, like sometimes I have to give people the bad news like hey, you know, like, I can’t fix a kid’s teeth and over You know, your teeth are actually a lot worse than what they are. But that’s something that I feel like, there’s some things that we can do to eventually fix it. But when it comes to, you know, the diagnosis that you were given, like, that’s like, kind of hard to hear. So I can imagine, like, the thoughts and feelings that you’re having. But I’m just wondering, you know, how you’re able to start to figure out what you needed to do for your child, because I know that you said that the doctor wasn’t the greatest as far as given the information. But you know, what was your next steps from there? I know you didn’t let that stop you because your son is thriving right now. So just walk us through what happened after that.
So in some ways, it was helpful that Remy wasn’t diagnosed till two and a half. And since I had this alternative medicine background, you know, basically, from one till two and a half, I read every single book that I could get my hands on. So I had learned so much about these different therapies about you know, how much the brain is tied to movement developmentally, how much you know, good fats, ketogenic diets can be helpful. You know, Dr. Amy Jasco, has an amazing book on nutrigenomics. They’re just, there’s so much information out there. So since we didn’t have a diagnosis, I just was looking at everything, you know, like, how are they treating kids, you know, on the spectrum with sensory processing disorder, because all these things, all these neurological things overlap. So the first thing after we got the diagnosis, I had been holding out on going to this place called The Family Hope Center that’s in Philadelphia. So what they do is they do a three day parent training program. And I always recommend this as my number one recommended recommendation for any parent of a child with any sort of neurological challenges whatsoever from, you know, something as severe as my son’s are something as, you know, less impactful as like ADHD, they just really give the parents and understanding about how the brain works and how you feed the brain and challenge the brain for growth and development. So they make the parents all go for a three day thing, and I’d never left me before. And it was I was also a single mom, I was out of work at the time, because those doing so many therapies with him, we were living at my parents house. So I had held off on going to their training program because I was like, I can’t invest in this, you know, like I know so much. But so as soon as he got the diagnosis, I was like, Alright, I’m doing it. And so I left for me, for the first time we did the I did the three day parent training. And then I brought him back to do their sort of assessment and training program. So that was, that was great. And then it’s just been sort of an interesting unfolding of other treatments and doctors that have come through our lives. So after that, a couple months later, a friend of a friend of a friend told me about a treatment place in Ecuador in Guayaquil, Ecuador, that doesn’t have a website, and is all sorts of shady, and you can’t even you know, get guaranteed that you’re going to be able to be treated but like you go down to Ecuador for a month, they do a brain map on your kid. And if they can treat you then you stay for the month and you do you know, hyperbaric oxygen and you know, some of these bioenergetic medical things, you know, some ozone therapy, alpha brainwave stimulation. So, you know, at the time, I was like, you know, Western medicine has nothing to offer me, I know that these things are safe, and they have the potential to be effective and like, effective. You know, I had long since given up on hoping that there was going to be a one magical thing that was gonna cure Remy, you know, like, there wasn’t going to be like, Oh, you get more of these fats in his diet, and he’s magically going to have that connectivity. But to me, it’s just supporting him, and incrementally, incrementally, he’s just gotten stronger and more engaged and more aware and more, you know, independent. And so that’s, that’s always been my goal. So then we went down to Ecuador, and we’ve done that six times. So it’s, it’s been a interesting unfolding for us, but I sort of try and trust the process and and look at things through the lens of you know, is it safe? Does it have the potential to help him and then I feel pretty fortunate that with my medical background, and just how close I am with him, I’m able to really suss out, you know, if he is not responding well to something and I can just stop it.
Real Happy Mom 14:25
Gotcha. Gotcha. So I’m just wondering, I know there’s probably moms are listening, like, okay, like, I know, the doctors told you that he’ll never be able to walk but what what is he doing now? Like, how is he doing as far as his development and everything?
Oh, man, so he is he’s walking now, which is a blessing and a curse. He’s Tasmanian devil in my household. But he’s walking his kicking a soccer ball a little bit. He’s incredibly healthy and happy. He’s nonverbal, but he has a speech device. So he’s able to use that to tell me what he wants. And it’s getting better and better at that. But most important to me is, he’s just so engaged. Like he saw a lot of children, especially with severe seizure disorders and these rare genetic disorders, they sort of have this haste to them, like they’re not really engaged in what’s going on around them. Like I’m the absolute favorite moment playground, because Remi has taught me to be like overly enthusiastic about everything, which is definitely not my, my natural state. But like, you know, I used to have to work so hard to get this kid to laugh, and I’ll do anything to get this good to laugh. But now he’s just like, giggling, he’s playing with things. He’s trying all sorts of stuff. So that, to me, is just the best part of it all he’s doing really well.
Real Happy Mom 15:52
I’m super excited to hear that sorry, my son was over here trying to talk to me. But I’m really like, just just like beaming right now, like, this is just like, so good. Because it’s hard. A lot of times when you get that, that bad news, like, you know, to even like start to move into a place where you can actually, you know, support your child and to get the treatment or whatever it is that they need to actually start to thrive. So I’m excited to hear that he’s doing great, but I’m just wondering, now just hearing your story and seeing where he’s at now. Like, what would you do differently? Or what thing would you say like, you know, if I could do it over again, I would do this.
I think those first couple years, I, you know, us moms, I burned myself out as hard as possible, you know, and, um, you know, I just sort of was like, Okay, if I just work nonstop, if I just read every research study, I can get my hands on all night long, I can do this, I can, you know, I can figure it out. And it’s, it’s been an interesting evolution from like, this is an intellectual pursuit to like, now it’s more of like a spiritual quest, I’d say at this point in, in our juncture, like, I’m always studying other stuff, but it’s just sort of shifted, in my mind, and I guess my heart but um, so I definitely would take better care of myself, especially in the beginning. But also I am not good at and have not been good at, you know, really creating my tribe, you know, special needs, parenting is so isolating, and then being a single mom on top of it, then I’m a solo entrepreneur, I own and run my own business. So like, you know, it’s it’s very, very isolating. And, you know, it’s very hard because a lot of times, parents of neurotypical kids are scared to like, have conversations with us at the playground, like kids will come up to try and say hi to Remy and see that he’s in a stroller, which is his wheelchair, essentially, or that is nonverbal, and the kids will have questions. And those questions can be uncomfortable. But for me, you know, it’s so much better to have a slightly uncomfortable conversation that leads to inclusion, then, then sort of shy away from the situation, which is what a lot of people do tend to do. But so I do I wish I had done a better job of building more community for myself from the beginning. And getting that
Real Happy Mom 18:21
that support. Yeah, no, that that’s so good. And you brought up something too, about, you know, kids excellent questions, because, at least for me, because I see so many people and I meet so many new people at work. I’ve learned not to be afraid to ask questions. Like if I see something so like, for instance, I have several patients that are missing their fingers, or it’s like cut off and they have like little nubs. And so I always ask, like, what’s the story behind your your hands or what happened to your fingers, and you won’t be surprised people want to tell their story. And they want to share with you because I had one lady, she was telling me she actually had it was some like, weird genetic thing. Like when her mother was pregnant with her. It was like, the embryonic food was stringy and it was attaching to her fingers and her limbs and stuff, and then attached the or it affected the development of our fingers. So it wasn’t that like she had a trauma or something that had you know, cut off her fingers they just developed like that. And so it was crazy for her to explain it to me and then like she’s given me all of like the super long names and like explaining the medical background on it. I’m like, Oh my gosh, this is so cool. And I think the same thing would go for your son to like his parents would not be afraid of you know, letting their kids like x those questions and being okay with saying I don’t know and like getting someone like you to you know, answer those questions I think would help too. But I’m just wondering for those moms who are they scared or they feel like oh my goodness, like am I gonna offend? You know, Chloe, if I answer these questions, like, I guess what would be the best way for moms or for the or? Yeah, really for the moms to have like the little kids like minus five heat, but he is not afraid he’s gonna ask you the questions. So like, how can we how can we have those conversations without it coming across as like, we’re just being rude or, you know, just making you feel uncomfortable too, I guess is the question.
So it’s, I think the discomfort comes more from the shying away from it. I mean, at least for me, and I can’t speak for all Special Needs Moms, obviously. But to me, it’s like, you know, nobody is more aware that Remi is disabled than me. And Remy. You know, like, and I assure you that I am in no way less proud of my son than any of you, other moms are of your nerd, like, I am just as proud of him as Obama’s mama must be, you know, like, you know, like he is, you know, the light of my life. He’s perfect. And I’m so proud of everything he’s accomplished. I’m so in awe of him, and like, I love talking about him. So like, there’s really nothing that’s ever, you know, sometimes, you know, it can be a little hard when kids are like, Oh, he’s a baby. He’s in the stroller. And I’m like, No, he’s not a baby, his brain works differently, you know. But one thing that’s hard for me personally, is, since I don’t have neurotypical kids, for me, as my only child, I don’t really know what to explain to your children a lot of the time. So like, a lot of times at the playground, like I have to be with Remy all the time, because I have to facilitate everything he’s doing for the most part, or make sure that he’s not going to eat a rock because he would. Um, so I’m always with him. But a lot of times, you know, like, your kids are getting older, they’re five, or six, or whatever, they’re running around doing their thing, and the parents are off doing their own thing, sort of chatting in the corner. I envy that Not gonna lie. But you know, a lot of the times, then the kids will come up, and they’ll come and ask questions. So that’s the one thing that can be challenging for me is that like, you know, just like, a lot of people wouldn’t be comfortable knowing what to say to Remy, especially, you know, like, exactly like, I don’t really know what your child understands, as a neurotypical kid, you know, and then they all range in what their understanding based on their age, but like, so to me, it’s just easiest, if at best for me, also, if the parent just joins the conversation with the kid, because then we can all have a conversation instead of just me trying to figure out what the other child may or may not understand if that makes sense.
Real Happy Mom 22:30
Yeah, yeah, no, that’s helpful. That’s helpful. Because I know, like, for my five year old, in particular, he, he knows a lot more than what I think he should know. I’m like, you don’t need to know that. But I know, it would definitely help that conversation. Yes, if I was there, and then I think, to, like, have an open mind to because I think a lot of times, it’s like, we’re so afraid of like hurting someone’s feelings, or being offensive, or whatever it is, but, you know, just kind of going in, like, I guess, axing the questions, you know, just being curious, not like being nosy or, you know, some other negative thing there. But I love that you brought up, you know, not shying away from the questions, because I think that is huge. But speaking of having these conversations to like, thinking about the moms who have kids that, you know, have some sort of special needs, and they want to, or they know, they have that, that knowing that we talked about that instinct, you know, what would be something that you would give to them as far as like any advice or just some encouragement to at that, because I know it can be hard, especially because, you know, you’re dealing with a lot more other things on top of, you know, trying to do the basic things, like feed them, bathe them, and make sure they’re smiling, like, you know, dealing with the other medical things as far as medications and treatments and appointments and all that it can be a lot. So I was just wondering what encouragement you have for moms who have children with special needs or don’t know, or don’t have a diagnosis just yet?
Well, I think that it’s it’s really important, first and foremost, to find practitioners who understand you and your child who are listening to you, and who are able to really address your concerns and what’s going on with your child. I mean, I have worked with probably 30 different practitioners for me, and I have them for different things and whatnot. And then I’m a doctor myself and probably like a fairly solid expert in neurodevelopmental disorders at this point, yet to meet a neurologist who understands the brain as well as I do. But you know, find find the people who are going to listen to you and who are going to be there for you. But then also like, you know, again, going back to that moment, instinct of like giving everything that you have in order to take care of your child like you need to take care of yourself and if that means Like your kid is missing out on a therapy, or you’re not going to be able to do something your kids eating gluten, or like, whatever it is, like, take a breath, like you’re doing an amazing job. I mean, it’s, it’s insane what we, as moms and as parents are expected to do in our society, like our society is so twisted in terms of what we’re expecting from our families, from our parents, especially in the world right now. And then if you add on being a special needs parent of any level, like, it really amplifies that by tenfold, I mean, it is terrifying, it’s overwhelming. So like more than anything, I just want to encourage people to like, take a breath, remember that like, loving your child for exactly who they are loving your child and being there for them and showing them how much you adore them. And that’s really 9090 95% of the way there, you know, like, from there, you know, find your fi and then you know, find your tribe find your find your care team.
Real Happy Mom 26:01
Awesome, awesome. I really appreciate that advice. And the other thing that you said that I will not forget, I think it applies to all moms who are listening is that you know, our child deserves to have a happy mom. And so I am so happy that you said that. And thank you so much for all the information that you shared, and especially sharing your story. But I know there are moms that are listening that want to connect with you learn more about you. How can we find you online? Where can we connect with you?
Well, I have so my company is radical roots, herbs. So you can find me at radical roots, herbs on Instagram, and maybe Facebook, it’s CBD with Chinese herbs. And then I also created a resource website, I believe it’s still called remedies, revenge calm. So it’s I just tried to compile a bunch of the books and resources that I had studied up on in the beginning of my journey so that other families, as they’re starting their journey have a place to sort of start looking at the different types of therapies, the different, you know, options so that they can go down the rabbit hole. But yeah, people can always email me at Chloe at radical roots, herbs calm, or reach out through any of those platforms.
Real Happy Mom 27:11
Awesome. Awesome. And I’ll be sure to have all of those links in the show notes. Chloe, thank you again for coming on. This has been so so good. I really appreciate you.
Thank you. It’s been a pleasure. All right.
Real Happy Mom 27:23
Now that does it for this episode of The Real happy mom podcast to find the links in Show Notes head on over to Real happy mom.com/ 164. There you’ll find all of the links that were mentioned, as well as a handy dandy coupon code that you can use on the site that clearly mentioned. Now do me a favor if you found this episode helpful. Go over to Apple podcasts leave me a five star rating review. This helps me out so so much lets me know that you’re enjoying the guests that I’m bringing on and that I need to keep bringing you more. So do me a huge favor. I’ll be super grateful. And also we’re going to get the message out to other moms so other moms can know that this is a great podcast to listen to. Now, I’ll be back with another episode take care and with lots of love
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