Transcript
Trigger Warning: The r-word is used in this conversation.
Hello and welcome to the If We Knew Then podcast. I’m Stephen Saux.
And I’m Lori Saux.
And today we’re joined by Lynette Louise, who specializes in Neurofeedback,
0:39
A trigger warning, the R word is used in this episode, the conversation that you’re going to hear is really transformative. And I think it was a beautiful hour that we spent with Lynette because this was someone that we we didn’t know. And in reading about her, I found a version of the R word as a description of different definitions of autism.
1:10
We have given great consideration to releasing this episode. It wasn’t a conversation we anticipate having. And once we found ourselves in it, we knew that the easiest way out would have been just to end it. And to be truthful. In our everyday life. We may just have done that well walked away. But we know this is part of the journey, at least right now it is.
1:36
We have strong feelings about the R word. Mostly that it’s old and tied to all the injustices of the time that it was born. When I hear the word I think of the dehumanization and the injustice is it carries on its shoulders, I think of the institutions and children denied life saving surgeries because their life was not viewed as worthy. I think of the fight that I’ve had to fight for my child’s education, based on the weight that the word carried with school administration and the segregation it assisted in cultivating within a school population. I remember the psychologists that spoke it at one of Liam’s first IEPs when it still had its place on the pages of the district’s handbook. I think how that Word planted seeds and a generation of people. I think of the grandma who approached me at the park when Liam was just an infant, she had that word on her tongue and told me that most people don’t want those babies.
2:44
For listeners who are as sensitive to this word as we are, we apologize for the nature of the fight, or if this episode is upsetting to you in any way. But we ask that you see it through to the other side. Because in our hearts, that’s where the value lies.
3:04
It lies in the place where our humanity shines through. And in that there is a connection among people with opposing views. Or remembering that we are all connected, no matter how broken that connection can seem. There’s even some healing and laughter and a hope for progress and change.
3:29
So our interview with Lynette Louise.
3:34
Hello, Lynette, thank you for joining us here today.
3:37
Well, thank you so much for having me. It’s always an honor to have so much of the audience.
3:41
We got connected to you through somebody that just reached out to us that knew you. So I use that information looked you up and what a very interesting concept and work you’re doing. And I just we were just kind of curious.
3:56
Yeah, we were curious about it. You call yourself the Brain Broad? Yeah.
3:59
Oh, this has got a little bit of oomph to it. Right? Yeah. Initially, people were calling me the brain lady. They were trying to figure out what to call me. I wasn’t a doctor yet. I was already working in brain rehab and doing it slightly differently and having better effect than most people. Which I’m sure we all say but you know, I took footage so I could prove it. And as I built that into more of a you know, let’s make a website. Let’s get you know, we started asking each other what should it be called? And if you look at my history, and if you read about me what you know, as I’ve got a broad amount of experience, I’ve done all kinds of things and I adopted many multiplayer handicaps children raised their children, fought with the educational system and the doctors even in college. I’m like, What are you talking about? That doesn’t work. So I’ve been abroad often in my life, and I go abroad with my work. So it really was a fit, and we tossed it around and it really stuck. Well, why
5:10
don’t you tell us a little bit about yourself?
5:12
I think I just did. But if you’d like it more linear.
5:16
Yeah, tell it because you you talked about that you did see on your website that you’ve worked in many different areas, like you talk about working and abuse, you speak about autism, you speak about the different facilities of the brain, you talk about your different therapies that you bring into the household. So I’m just curious, like, where did all of this start and your interest in the brain and more specifically working with children with autism?
5:39
Well, that happened. More than an interest. It’s sort of happened if I was to blame anyone, I’d have to blame Elvis Presley, and the movie change of habit. Where were the nun Mary Tyler Moore, and that Dr. Elvis Presley decided to cure this hopelessly autistic child because she was abandoned. And so they hugged her until she turns normal. That doesn’t work. I tried it. It’s not a good idea. But autism itself wasn’t really the goal. I started out as a child of abuse. My mom was a teacher respected in her town, but super, super, super physical and verbally abusive. When I was a child. And I remember many times, sometimes I tell this long sometimes short up, I’m going to choose short today. I was just hiding in the bathroom while she’s trying to break down the door and I got my knees locked, while I’ve got my feet against the door and my back against the wall. And I’m thinking, Okay, remember how this feels? Remember how this feels? And make sure when you grew up, you saved children? How many children am I going to have? I’m gonna have six, no, eight, no, 12? No. And that sort of evolved. But the the mission and the decision to be making a difference in the lives of children was really born then I you know, once you have that direction in life, then things show up, and they flavor it. And I’m a kid and I see Mary Tyler Moore. So I think maybe I’ll be a nanny, and I see the singing nun. And I think maybe I’ll be a nun who sings because I also want to be an actress while I save the world. So you know, like any child, I had kind of a collective vision of how it should go. But it turned out I did most of it. So except for the nun part. I did, I did do you know, performing while I was helping the kids and stuff. So it was it was really born in my childhood. And I also had my own brain challenge, which was probably part of genetically passed on because my mom was clearly not all there. So I had pixelated vision and different sensory things that were later historically diagnosed as possibly Asperger’s. But I didn’t know that going in. I didn’t think I’ll get autistic children. And even when I got children that I adopted that were multiplate challenged and had autism. Autism wasn’t the only thing that fetal alcohol syndrome, they were considered low IQ and the retarded range, Tourette’s, different things, you know, so autism was just sort of the common ground amongst us all.
8:28
So I want to go back and revisit the movie.
8:34
I love this. I love this. There’s two people here at once going no, no, you’re putting your head down, don’t you know get to ask the question. I’m asking that question.
8:45
No, I want to revisit the influence of, of the film and their beliefs. And also I want to go but I want to really know why you had to you kept telling yourself to remember this feeling. But I just want to stop right there. Because one thing I was gonna not talk about this for a while you just use the word retarded. And on your website, you have retardation. It’s a big part of your explanation. And it’s really a word that’s being taken out of society because of its detriment. I mean, I know that it’s a clinical word that I know where it was born. I know what it means. I know it’s medical. But it’s really I think that was I’m so interested in all the stuff you do, but I was so stopped in my tracks by the liberal use of the word retardation and, and I wanted to, to talk about that because that is a word and and you just use it right here about it’s not a word we use. It’s a word that’s very damning.
9:50
We have never used it on the podcast before.
9:54
No and actually I think this is something that will keep him because I know that our families it’s a It’s a, it’s a challenge. And I know like my daughter, whenever she hears it at school, she’s like, she has to fight because she has to decide if she’s going to say something about it. And I know that the families, the in our community, it’s something that really hurts because it’s fueled with so many limits and archaic beliefs. And it actually is at the heart of a lot of the limitations and an injustice that our children have to fight to overcome. So, that being said, I’m going to ask you why you use that word still?
10:38
Well, you’ve clearly shared your opinion. So now I’ll share mine. First of all, I try to stick to the accuracy of the history, I otherwise you get lost in rewriting history. And we have this battle all the time, everywhere. So when my children were diagnosed, they were diagnosed, I actually softened it the way I said it, they were diagnosed as one as educated, blue retarded, and another as uneducated blue retarded.
11:05
So Lynette, I’m gonna stop you right there. Because I am very interested to hear about changing your brain in that, but the, you know, when you talk about, I use it because it’s historically accurate. Historically, our children were taken away and put into institutions, you know, so and and to rewrite that history is to say, hey, we know more now, these lives have a value. And so I don’t think it’s rewriting history. I think it’s when you know, better you do better. There’s a lot of words that are no longer in our vocabulary, because they do come from ignorance, and they’re hurtful. I
11:45
agree. I agree. And I certainly thought it all through and I certainly have a lot more to say if you’ll let me say it if you left me, but I’ll try.
11:54
I’m gonna try.
So bite your tongue for a second.
11:59
I just have to let you know that just because I do respect you as a human. But that doesn’t…
12:05
You don’t know me. You don’t have to respect me just on face value.
12:08
No, no, I respect all humans. And I think we do respect each other. And I don’t know, that’s just that’s just who we are. So I’m not gonna bite my tongue. Because I don’t think that really helps anyone. But I’m curious as to you have raised children with autism. Why it is that you continue to use this word that’s very damning and hurtful.
I don’t think the word is damning and hurtful for starters. So we’re coming from a different belief system. Yeah,
12:35
Maybe it doesn’t hurt you.
Well, remember, I do have these kids. And I was different, too. I do think that the people who use the word in a way that is damning and hurtful, or damning and hurtful, I do think that I had to find a way to help my children be comfortable with the things coming their way. And I do think that using the term that was used on their diagnostic papers, so that when somebody goes, Are you sure? Did they really have all that? How is it possible that they are now not anymore? I can pull up the papers and say, here they are, but if I start changing the words, that’s probably not useful. I do think that having my son one day, in fact, I wrote an article about this called Reality retarded, because we were sitting at McDonald’s, and he was considered possibly educative ly retarded fetal alcohol syndrome often lowers the IQ, not a surprise. He was classically autistic. He had Tourette Syndrome. So
13:42
If you’ll just do me a favor if, if you’re going to continue to use the word if you can just say the R word because it is something that I don’t feel like…
I’ll stop using it. If you stop making me keep explaining. It’s almost over. It’s really you that stuck here? Not me. And I don’t even have to do this. It’s fine.
You’re right.
But I’m gonna give you my honest truth. Okay, so anyway, so he’s sitting there, and I’m explaining something you know, again, social for him because social things were such a challenge. And I think if I remember correctly, it had to do with the person that would have weighed in on us being a little bit abrupt with him and and impatient with his stutter and me talking about, Well, you never know what was going on with them. Maybe they have their own issues with you know, hearing or comprehending all these things. Anyway, we’re sitting in in the McDonald’s parking lot, and, and just chatting about it. And it was just the most beautiful moment to me. And here it comes the last time he just turned to me and said…
If you’ll just no say the R word, I’ll appreciate it.
14:55
Well….and he said, you know, Mom, I think I used to be reality retarded and And I thought it was a great combination of teachings in his life that he was able to go. Here I was someone who couldn’t understand things. Here I am now, someone who’s understanding social things. Here, I am able to use a word that used to be thrown at me, but we got comfortable in our home with so that everyone would be comfortable. And I feel like it’s a past tense. So for me, this was a celebration moment. And if I were to get stuck, like you’re stuck right now, on this one concept, this word that’s in the way of all these wait conceptual sharings that I’m giving you, and even your face is all frustrated. It’s like, that’s my problem with that kind of progress. I do believe we need to care about this stuff. I think we need to care about it in our soul. But at the same time, the truth still exists, my son still existed through the bullies through the life story. And I still had to my son’s get them to a place of absolute comfort. And I still had to be able to look at this word and de pain it, I can’t think of it, you know, take the take this explosive target out of it and make it a thing that some people use this word this way. Some people use this word that way music, musicians mean, play slower. It’s just a word. Now, to give it a little more background, I raised my kids while doing stand up comedy. So
16:45
Lynette, and I just want to go back to it’s just a word because…
See you’re stuck, not me. I’m not the one. It’s you. I’ll do it all day if you want. But it’s you.
16:56
If you’re fine with the word, you can at least agree that a very negative part of the word is it blunts conversation? Well, that it does what’s happening right now. Yeah, and a blunt communication. But the communication of the good stuff you want to say, will not be heard. And I think there’s like an insensitivity. If you know that it’s a word we don’t like and you say it again. It’s it shows an insensitivity. It does and shows I’m doing whatever I want to do.
17:29
But I you’re the one making the conversation continue. I’m not insensitive to it. I just think that you have to be aware. In fact, I love what’s happening right now. I think we’re having a chance to have this conversation because I used it.
I think it’s a really important conversation. And yeah, so you know, you talk about the word and it’s there, and it has power and you want to and I get that because when our child, we don’t use certain words in the house at all that demean or, you know, we don’t use fat, we don’t use stupid, we don’t use any of those words. And when our daughter went to school, and at some point, in the fifth grade, someone called her stupid, and it hit really hard because that word had more weight to it. And that’s not and that but that’s not really what we’re talking about here. It’s not, it’s about taking a word that literally, it’s actually being taken out of medical books, because it’s, it’s an inappropriate word to be used. And the word the way that it’s usually used, because it’s no longer a medical term that’s used, I mean, you can find like really old doctors that still use it, or narrow minded doctors that still use it. So because now even the medical community who usually are the last ones to kind of change things that work. They’re eliminated at the school system, they’ve taken out of their vocabulary. There’s like a whole big campaign about that’s an offensive word that really limits humans like the N word like so many words that are just like throwing out and and I get like, Okay, well, my kids have this, so I can use it. And this is still being out there and you but you have to like do you realize that by keeping that word in circulation, you propagate the use and it opens the doors still for people who should not that are not affected?
19:34
I know, it’s your belief. It’s not mine.
19:38
I know that I can tell totally.
19:40
I believe very much that I’m doing the opposite. I believe very much. And if you’d let me say it, and maybe someone will hear it, maybe even you.
19:49
Here’s the question is because this is the only reason I had this conversation because after reading that I was like, I don’t think I want to do this. But what I read on your website was you talk About, and I’ll get the exact verbiage that you use. You say labels are an invention of medical science. And as such, not an impenetrable statement of fact. So wait, so you said that and so I was like, Well, you know what, maybe somebody else builds her website, and she doesn’t realize that her definition of autism is retardation. My husband watched a video and you talk about Down syndrome being a brain disorder, which is not it’s a natural occurring chromosomal arrangement. And so it’s and I just, there’s part of me that can say, I don’t want to talk to this person. And there’s part of me that can say, hey, look, you see things differently than I do. Your verbiage is putting out that false information about Down syndrome. And also using a word that is very limiting, as far as I mean, it’s, it’s just a word that isn’t used. There’s so many campaigns and I, and there’s a part of me that says, You’re a human, and, you know, you have whatever your life is, and it seems like you have a good, you know, like the that you want to change things. And, and that’s why I’m curious, because just I’m gonna tell you one more time, it’s really damning, and hurtful. And you it’s not to you, but I’m telling you that damning and awful.
21:24
You know what, there’s many, many people in the world. I’m not really sure what you want from this interview? Certainly not my information. That’s unfortunate.
21:35
No, we did. We did. I’m just curious, because you have this stuff.
But then then there’s this thing that really rubs you apparently,
21:46
You know, what rubbed me the most because I hear I hear the R word. And I, you know, and I’ll say, oh, you know that, that bothers me, even though it’s just I’m the only person in the world. Just the fact that the person I asked that have says, Well, I’m gonna say it again. And again and get ready is that that’s, that’s the hurtful,
22:06
That isn’t actually how this interview went. When you replay it, you’ll hear you’re just fighting me, that’s okay. You are right that Down syndrome is a chromosome situation, but it results in a disordered brain and results in dysfunction, it results in challenges. If it didn’t, it wouldn’t even be a thing that we try to work with and help people with.
22:32
But honestly, there’s a lot of things with Down syndrome that are things that are based in inaccuracies and misperceptions.
22:39
As with everything. There’s not a single brain challenge. There’s not even there’s nothing that doesn’t have all this controversy around it.
22:47
And I guess what I’m excited about is here you are one of those people who put the information out that I’m like, how does that information even get out there? Because it’s not my experience, and I get a chance to talk to you, and I’m not afraid to talk to you. I’m like, where does that information come from? Like where I’m, you know, using the R word in in the description of autism and not caring that cuz there’s other times because I’ve ever, but it’s on your website, the retardation under each like, what are under your art, what is autism page? It’s under each explanation. As for what autism is…
23:27
I think you’re mixing together some of my stuff.
23:30
No, it is on your website unless you take it down, which would be great.
I’m not gonna take it down.
I’m just curious. Because as a mother of a child with Down syndrome.
23:44
No, don’t believe you’re curious. I think you’re just mad.
Do I look mad?
I think you are just offended. I’m not sure what you want from me. Like, I you know what, there’s so many people in the world. And there’s this nugget full of people that are really helped by the way I do it. And I only need to help them. And the people that are offended and perceived differently, they’ll find someone else I can help everybody. But I am motivated to help. And that is why and I may come at it differently than you and I may look at it differently than you and my explanations may rub against you. But then you’re not my clients. You already went off of my website and somebody else went, Oh my gosh, I am I’m coping with that. And they found me and that’s the way it should be.
24:35
What do you mean, we went off of your website?
24:39
Somebody who’s searching for someone right? And they see it and they go, Oh, I can’t I can’t use that word and they don’t want to deal with me. They’ve moved along. So the people that want someone who speaks like I speak talks like I talk who’s worked, you know, personally with their own children and then works with families and does it in is different way, they find me. And they find me because I’m honestly representing myself. And if I change to be PC the way you want, then I won’t be honestly representing myself and they won’t find me and I won’t be able to help them. And I’ll probably be a watered down version for the ones who do, because it won’t represent what I bring to the table. So I’m sorry that you’re so offended, but then you should have moved on and not having me as a guest or else we can keep fighting, it’s fine either way.
25:32
I don’t feel like I’m fighting with you. I feel like you’re saying that the one word that’s on your website, the one thing that that is hurtful to our community, that might be what makes people go, Oh, gosh, and turn away. But why? Since there’s so many other words to choose from.
25:49
I don’t think it’s hurtful to your community?
Oh, it is.
I have a different belief system right here, right? We’re operating from a different place and you would not have hired me.
25:59
Can I ask you, I want to know why. With all the information that’s out there. With the word being eliminated and all the campaign’s from our community, but also from the world. Why would you think that it’s not hurtful when that’s the message that is clearly being sent?
26:14
I truly think that it matters very, very, very much what I said in the beginning that we include I’m 65, okay, like, this doesn’t matter to me, I’m retired, I’m just sharing. I think it matters very much that we include truths along the way in the shape that they were in, for example, at that time, they thought that autism was caused by refrigerator mothers. Well, that turned out to be ridiculous. But I would always talk about it, in that if I was telling the story of adopting my children and finding out they were locked in closets and things like that, and feeling like, oh, as soon as I warm them up with some love and give them holding therapy like Elvis Presley did in the movie, they’ll pop out of this strange brain condition and be normalized. If I want to talk in present tense only eliminates the entire story, it undoes the progress, it makes it impossible to tell the truth. I’m sorry, I just I think it’s part of it. I also think very much that it’s important not to get stuck in the way that you’re all at all stuck right now. Like, I think words should be exactly what they are. Because you can really hurt someone with the word pretty. You can really hurt them with the word rich, you can really hurt somebody with the word, you and your big hair. It’s how you treat people that I want to talk about. And I think it’s a great opportunity to be an expert in the world and be able to say, I’m going to show you love and kindness, I’m going to be easygoing and happy no matter what you what you throw my way. And I’m not gonna let words be the problem. So that’s who I am and what I bring to the table. Even if that’s not good for you. I’m sorry.
28:13
Well, if I thought that saying you had pretty hair hurt you. I wouldn’t do it.
28:19
I didn’t call you the R word.
You say that we are stuck. Right? But do you realize holding on to the past is stuck.
I don’t hold on to the past.
But you said about holding on holding on to the past of like using this word is in the past.
And again, I never said holding I said representing.
Okay, or using this word not letting go and not having to change because you think the past is so …
28:50
I do not use the word in present tense when I’m talking about people in present tense.
28:54
But your website is present tense. But I don’t think it undoes the damage, not the progress for you to move on. So to not use a word from the past, whatever it is to not use that because we’ve learned that it’s hurtful or bad or even Inaccurate and wrong. That doesn’t mean that the fact of all of that information isn’t there anymore. But what it does is it allows you to then focus on the present moment and not hold on to the past. And so I don’t think it it undoes the damage of that word. By evolving.
29:33
If I were if I were taking the stage, if I were taking the stage, and I was going to do a talk, I doubt I’d use the word and it isn’t because I’m afraid of the word is because it would do this would bring all this forward. This began with me explaining my children and at the time, that’s how they were diagnosed. And I don’t shy from that story. I’m not going to shy from anything in their story. Yeah, I’m not going to rewrite their story. And then it turned into this discussion for a reason that has to do with how it affects you. Now, that’s how I honor the change in the world. Now I might while on stage, if I talk about my children, I would then use the word and say, and at that time that that was the official diagnosis. And again, I’m not going to shy away from it. And I’m proud of much of what they’ve learned to deal with, you know, we aren’t we’re also multiracial. So, you know, we’ve had to deal with all the things that come with, you know, moving from, for example, I wrote a book that I haven’t published yet called my brother was an Indian. Well, that’s considered negative now. But that’s what he was when we adopted him. That’s what we thought. And so the progress and the change and the way we were affected, is, is integral and tied into that. Do I call people that now today? No, but when we adopted him? Yes, my, you know, my goodness, that was it. And so, and along with that came all of these behaviors on our part, thoughts on our, like, my mum thinking is she dressed him up in a Ford trail suit, he turned white. Like, there were all these racially crazy things that came as a result of us perceiving it in a certain way. It was never the word though. It was always what we thought that stuff meant. So yeah, in our in our family now that we have, you know, blacks, and Arabs and whites and Asians, and we, we play with all this stuff in the house, so that it is desensitized, and everybody’s comfortable with all of these things. And they are, do they use them on people never against people never.
32:03
Lynette so the way you came at me judging that, oh, you’re angry, you’re stuck and all of that, I just want to let you know that I think most people would walk away. But that’s not who I am. Because it’s very defensive. And I would have stopped and I wouldn’t have gotten to this part of your conversation, which maybe is more truth than then that this is my word. This is what I’m using. You are stuck. You’re the reason you’re not my family never talked to like that, honey. Okay, well, that’s how it sounded on my end. And as we all know, it’s just perception is, you know, the reflection of who you are. So that’s how it was, it came across. And those were some of the words, I felt like, That’s what I heard. And I’m so glad that you don’t think that’s what you said. But what you just said about, you know, if you were on stage, you would tell it as this is part of his story. And this is what it was called. Absolutely, because I think the value of that that’s what we talk about when my son was first born, I there was a woman in the craft store. And she was like, and she used the word because that’s what she was told. And, and I think that that is important as we progress and grow and have a voice and make change. I think that is so important, because we remember that, hey, our kids were put in institutions, our kids still are fighting for an education, but even more so they didn’t even have a right to fight for their education. They didn’t have a place in the classroom. They you know, and you talk about that, the words that you said that you thought that they created behaviors as a result, and of perceiving a certain way. And that is what I’m trying to say is that what you experienced, which is no longer because we’ve grown because we’ve become diverse because, you know, people care because there’s change because people have voices. So all of that stuff that you had to go through the R word, the N word, I word, the every word that you had to get through to do the good that you’re doing, giving, you know, kids, a home and love, which is really the only thing that matters in this journey is love. And when things are done out of love. So you had to go through all of that. And those words, you know, they’re no longer they’re no longer used in society for a reason. And if they are, I just watched the video of some of a couple, getting into an Uber using the word and you know, there’s no work. Yeah, you know, and it’s just not acceptable anymore. And I think that was my question to you, because I do feel like you have a good heart and you do this good work, but the word is all over the place. And even in your video about Down syndrome, and sometimes we do it because we don’t know or we don’t realize, or whatever it is. And I think that’s why I was so open to having this conversation because I know I can’t change anybody’s mind and anybody who believes certain things and Sir Some things that are acceptable, there, I don’t even have that conversation, I’ll just walk away. Or I’ll say, I don’t use that word and I walk away. Because I’m not changing anybody’s mind. What I do is I change my community, and I advocate for my community. And I’ll at least verbalize that, you know, I don’t use that word, and that word is hurtful. And then whatever, whatever I it’s not as walkaway, but I looked at your website, and it appears that you care about it, you know, especially in the past, just, I mean, being 65, I know that you probably experienced in a whole different realm of what was acceptable. And you have that to make, Oh, yeah. And I had to change as I went to, and you make that change. And so that’s why it wasn’t for any other reason. But I saw that you did good. And then I saw that this word was there. And I wasn’t going to say until we got further on when the subject came up about labels. I wasn’t going to say anything, but then you use it so freely. And I just have to say, and you may never change, and the word may remain on your website, and you may continue to use it. But it hurts, and it hurts the community and my son has two hurts my daughter who’s neurotypical. And I just had this conversation with her the other day that a kid that used it said, Well, I’m allowed to because I have experience with it. And it’s like, well, like you said, like you use it in your home. That’s okay. But you can’t just use it. Because you hurt other people, you know, and I was telling her well, like, maybe it’s okay in his home, and you don’t know why they use it in their home. So we just have to say you said your piece. And you know, and you know, and you don’t know, it’s the reason why it affects you is because we know that it’s hurtful, and it’s not used in your home or in, you know, we actively tried to eliminate it.
36:53
So do you want me to respond? Or do you want to let that be the last word on it? Because I’m happy to respond, but it’ll just probably start it up again.
37:03
I just wanted to hear why. And I think you I think you really like the message and the fact that you use it. And when you tell it I think that’s right on par with like not forgetting what you’ve come through. That’s it. And I think that you, you you try to make a difference and change the world in a good way.
37:24
I just myself don’t want to get caught up not saying things because we’re being so careful. I will also really want to teach the difference between the intention behind a word and the word like when my kids would be yelled at and called the R word, then it was hurtful. But when they when somebody very kindly said, Well, is he? Okay? It’s very weird for me to dance around it and say the R word, but okay,
37:54
I appreciate it. I totally appreciate it!
37:56
But if they do it in this very sweet, well, Is he R word? I would say Well, yeah, that’s what they he was diagnosed, but we’re literally working on that. And I never saw that as a thing that couldn’t be changed. I also was smart enough to look around the world and go Hmm, where is the IQ a little lower, so we can move there and my kids will fit in better. Like I took this and opened it up. And I think opening it up is the way to end up with the end of the story that I have which is you know, one of them is a helicopter mechanic has been 20 years in the service and it’s going to re up and going overseas a couple times. Another one’s been on a second career this time he’s a welder and they have house children, wives and you know once the quirky guy in town because he was more challenged. But they’ve all managed to do really well with the exception of the boy mentioned to us locked in a closet for a couple of years he’ll probably always be my best friend buddy that travels with me everywhere. And all in all cases this opening up of the mind and this look into what will work rather than where what’s this horrible thing I just avoided fights. I you know, I would duck and weave if the school wasn’t serving them. Well, I didn’t fight the school for very long I fought. And then I went okay, this isn’t working and it’s hurting my kids. They’re getting lost in the fight. You know, this world of special ed. It’s a lot like a domestic abuse situation where you got this violence going on between two adults and they’re fighting and fighting even in the autism world itself. You know, you’ll have little things like vaccines no vaccines or facilitation versus RPM or and everybody gets fighting so hard for their position and they lose the kids years go by in this fight years. I remember speaking of Down syndrome there was a young girl who had Down syndrome one my Kids are really little. And the parents fought and fought and fought together, embraced into the school system like everyone else. And I read it and it was the story of success, you know that finally they were accepting her in and back then you weren’t right, you were shuttled off somewhere. And so it was this great story of the difference they’d made. And I thought, Okay, I’m making that difference later, when the kids are older, because they just spent five years doing that five years of that child’s life is a lot of time.
40:30
It’s a lot. When we just left the school that we left, because we were fighting, that was one of the things I said nobody should craft a cry over, elementary spa, no parent, no parent should feel like you shouldn’t feel like you are being mentally abused. By an elementary school, you shouldn’t feel you shouldn’t. You shouldn’t beg for your child’s education, but you’re meant to you shouldn’t and those things and you said that you gave up the fight, like you decided to do it later. We just learned that lesson. Like we just got through eight years of of what was a fight. Now we were very fortunate that we had a lot we had, we didn’t go on summer vacations. But we hired a lawyer every year for our IEP. And because of that presence, which is so just just absolutely gross, yes, that we had to have a lawyer to ensure something that you know, people fought for for so long ago for our child’s placement in the classroom. We were fortunate that Liam did have a place in the classroom, it didn’t stop that we had to educate our child that we had to can be on top of people doing our jobs. And I don’t know about you, but I’ve never had a job that if I failed so flagrantly, that I would continue to keep my job, which was frustrating, right? So we just got to that place where he has an inclusive environment. And the feeling of not fighting is a gift. Right? You say which on your website, which I completely agree with is that a parent has so much and I’ll try to find it exactly. But basically you say that, as parents, we have the real input in our child’s life.
42:10
And maybe the commitment for life. So we’re lifers, right?
Maybe.
42:14
But I think we have the love. I think we have the commitment. I think we’re the ones who believe in our child, every so often we come like we have a great school right now. And they all believe in our son. But before that every so often someone would come along and it was such a gift. But we realized very early on, that it was about our place in his life, our advocate could see our our being a voice before he has his voice. But but you’re you’re right as far as just that journey, like every parent has a journey. And and they’re all different. Every parent, not yet not just not just every person has a journey. And they’re and everybody’s story is very important. You talk about coming from abuse and and how that really made you want to fight for kids and make a change.
43:07
I think about that moment at the door with your knees locked, holding the door closed, you know, how do I how do I stop this from happening to other kids? You know, how do I…
I think that’s why we do it .
But how can I make sure that a kid doesn’t have to fight for themselves like that?
43:24
And and I’ll be you know, when you talk about abuse, there are certain things that you believe about yourself. There’s certain things that people tell you. And it takes a long time to stop believing what they said, for sure. Some words might set heavy and then maybe it’s the I didn’t let that word Get me down. I’m not gonna let words inhibit people I love maybe that’s a part of a journey.
43:53
Well, I think it was more things like having people say things like that to my children, but having already accepted their diagnosis is something I should help work from. So they didn’t sound like the same word to me. They just didn’t and they aren’t it’s really about how they’re used. And I still believe that you should remove and change and and and address stuff as we move forward. We wouldn’t have gender equality and things like that. But I also think it’s super super super important to stay aware of the multi faceted nature of this different cultures. I traveled the world and you know sometimes words are like the C word is a favorite slang term and, and like England and I have so that’s another exposure I have is I’m always exposed to the constant difference and words are just words all these different languages when you speak many languages, they’re just sounds that you use to either hurt or not hurt. To help or not help it become something else.
45:03
And you’re right about intention, some words are more hurtful. And how they make others feel we stop using those words, it is the intention. And part of that is like you understanding that in this conversation with us that the R word bothered us like it may to a lot of people, and then you did. But you know what, it’s uncomfortable for you. But we appreciate.
Oh, I totally appreciate like, and I know it’s an effort, I think that’s part of it is that the effort is there for somebody like if I go to open a door for somebody, it shows an effort that I’m going to help somebody or, or if they have a bunch of packages or something. I think that that’s appreciated.
45:41
And if they say you don’t have to open my door, because that makes them feel a certain way. Oh, yeah. I wouldn’t open it then?
45:47
Because that happened to you. And you were like, sorry,
45:48
Yes. I was in an elevator actually. And a lot of times growing up in the South, a gentleman would, you know, always let a woman out of the elevator first, right. But I could totally see how that can be a bit creepy.
46:00
But it’s also scary. Like, I never thought about that. But because now you have some man behind you.
So once I understood that I went yeah, I’m out of here. Yeah, no problem.
46:11
And it’s also much bigger than that. I remember when I was in Lebanon one time when I first got there, and I didn’t know the money or how the exchange work. And they just really, really want to carry my bags, but I’m really afraid I don’t know how to tip. And I’m like, no, no, no. But it every time I would have an experience like that I had realized, oh my God, there’s so much more to all of this than my life taught me. And over and over and over again, we just don’t know each person’s story. We don’t know their culture, we don’t know, it’s one of the reasons that the show that I make fix it in five, its intention is to show at least five different cultures because it’s so certain nuggets, stay the same regardless of your culture, regardless of your belief systems, your religion, your ethnicity, any of that stuff. And those are the things that I want to show work every time like the neurofeedback that I use for brain change the addressing the behavior in the moment and helping the person to respond in the moment the way that you do that in a playful fashion. So it doesn’t feel like you’re being put down all kinds of things. So I was motivated to do this and I pay for it all I don’t make a cent. But it’s, it’s this give back feeling of nobody has had the chance to, like you said every parent, you know that one fight with your child or whatever, I had eight. So I had to go, Oh my gosh, this school is fantastic for dar and it sucks for everyone else, we have to leave, I have to take from Dar when he finally got in order to give to the others. And that kept happening over and over again. There were too many exceptional stories to fit it all. And maybe that was a blessing because I just kept going okay, not to school. Okay, not this. And then finally I went, Wait a minute, I can do this. And I homeschooled. And I just went for the nuggets, the stuff that really mattered. And I got funding and yes, I had to work I was a stand up comedian. And I was the actress and I had a TV show and I you know, I men didn’t really want to pay my bills. Um, and they were a lot my kids were a lot to handle so people ran from it. And that was a blessing to it gave me clear sight to what actually worked and that’s to get back on I do and I guess it’s part of this thing about not getting lost in whether or not you’re covering your ankles, so your arm so you know if if your whole face shows if your hair can show if you use this word at that word. In the end, what really helped my kid was yes, neurofeedback, it was really a game changer. really a game changer in my brain as well. But it was really just looking at them as who they are knowing they could learn the next thing. And what’s the next thing in each of them? That was a different template. And everybody trying to put a template on them because of their diagnosis or what they believed they were or because of their race or what, right everybody who was doing that was harming them. So I don’t think it’s a word I think it’s the stuff you believe because of it and again, no, you’re right. You’re it’s thank you enough actually for the conversation and maybe I will have to go through it’s been a long time I’ve been putting stuff up maybe some of its old enough that it’s no longer relevant or useful.
50:04
What you just said about, you know, do I cover my ankles or my face or everything? And I think, you know, unfortunately, what, you know, we’re talking about the R word here that that might dissuade people from really finding this information. Do you know and and that’s the unfortunate part because…
They probably wouldn’t want to listen, learn from me anyway, though.
50:23
No, it’s not true. I think it limits what you think, you know, people who are hurt by a word, you know, they’re not hurt by the word. They’re hurt by everything. It is, like you just said everything it carries with it. And I think there’s so many other options. And and, you know, honestly, I thought it was so cool, because you had these things that worked. And then you have that biofeedback. So it’s actually it’s almost it is a visualization of them seeing what’s happening. And I think that’s so empowering. I thought it was very interesting. So to say that people who are offended by the R word wouldn’t be interested in what you do is kind of limiting and judging us people who don’t like the R word.
No, I don’t think I don’t think it’s true to say that I don’t think they’d be interested. I do think they’d be interested. I think there’s a lot of practitioners that use neurofeedback, I think there’s a lot of people putting stuff up there’s a lot of and so I think it’s really important to…
51:27
You’re the first neurofeedback, I didn’t even know about it.
51:32
Gosh, when I found out about it, so my son, the one who’s still minimally verbal, when I found out about it, it took so long for me to get over the fact that it was invented before I adopted him because he was in his 20s and I got my first full hand on the back hug as a result, like these small things that I got, I could have got way back then. And we could have had this great trajectory of change over the years right? But there’s no point in that that doesn’t help you be strong, it just sit around and feel bad about those things. So you just let it go.
52:08
Let the past go. Just you won’t be in the present moment. Yeah.
52:11
Neurofeedback is brilliant. It’s a way of teaching the brain how to operate differently. It’s not intrusive, you’re not putting wires into the brain or electricity. And there’s all that available to and I’m not dissing it, I think it’s they’re all good therapies, I won’t do them. I don’t like intrusive things. So I love teaching. I love the concept of neurofeedback, that I can teach to the brain waves to the behavior of the brain itself before it turns into a behavior and or an emotion in the person. And that hooked me right from the get go and changed everything for us.
52:53
Because you will actually with electrodes, you’ll be able to show the patient or the person what’s happening in their brain?
53:00
Yeah, okay, so that was so fun for me because I gotten so much trouble for saying electrodes because they are electrodes by the way. Oh, is that wrong? We’re not allowed to say it anymore. Because it scares you know what?
I won’t say it you if you tell me.
53:15
It’s funny to stumble across a word to just that kind of book and…
The E word!
Yeah. So we’re supposed to call them sensors. It’s not a scary.
53:25
Yeah, I guess using electrodes people would would it would call back to shock therapy. It totally bookends, Lynette. Like we’re taking something from the past, changing the word so that we can go forward and make progress.
53:40
But to rewrite the dictionary because actually sensors inaccurate, but it’s what they want us to use. So that’s what we’re using. So um, yeah, you’re looking at the brainwave behavior. Now, the average person would need a lot of training to understand what they’re looking at, right? So that’s not really very relevant for a lot of people. Now, I myself demystify everything. So in an example, here, a lot of times, you’ll go to a clinic, and they’ll say, you have to focus you have to play this game, you’re playing with your brain and all this. And if you don’t focus and you don’t know what the other person’s doing, so you’re giving up your power to the clinician who’s pushing the buttons and has all the knowledge. I actually do this in homes and teach parents how to do it. And I show them the brainwaves instead, and I use the game to with the kids, but I also show the kids the brainwaves. And I say So here, you’re making too many of these. And when you make so many of these, it’s hard for you to talk because that that sensor is here on the part of your brain that cooked to the way you’re gonna make your tongue move, so we’re gonna get you to make less of these. Do you want to play the game or do you want to look here? What’s interesting is, I’d say 4% of people choose the game Even though it’s more fun, right, they want to actually see, yeah. And they check their numbers and they watch to see, you know, is it improving. And I also don’t make them focus on it, I just tell them about it and say, because that’s a lie, it’s not necessary. It’s an auditory feedback system. For the most part, you do have the visual component.
55:21
It seems very empowering to be able to see because I feel like a lot of times, that’s, that’s what gets us is that we feel like we have no power or, you know that this is happening to us. But it’s not it’s that we are participants. And I think that it you also talk about, it’s good for ADHD, and depression, and so many other things that are our brain. And people forget that we, we, we control how we respond to our brain. And we have the power, it takes a lot, a lot of work. But I mean, that’s what meditation is, is controlling your thought, your thoughts, so I can see how empowering, that must feel, not only to it, yeah. Because it’s not like, oh, this just happens to me. And I feel like it’s not only empowering to whoever is your patient, but also to their caregiver.
56:11
Well, you know, I have to say, this conversation has been very enlightening. It’s been very interesting too.
And you didn’t go turn me off.
56:21
No, we don’t turn people off. No matter how much you wanted us to turn you off.
56:25
I was so interested in what you do. And also interested, once we got into the conversation of what your thoughts were, and then we came to a place and it became a conversation, this should be able to teach people that there’s different views. And at the end of the day, we still have our views, or sayings. You don’t like that word, I can know more about you. I even saw you react to us and say, you know, for you, I’ll do this and early on, Lori said, we respect you as a human. And that is something we we think you will have to earn but being respected as a human. I think we if we all just loved and respected each other, they can lose the respect.
But that’s actually how I go about it too.
Yeah, I think that it was you as just a human and it looks like you do good things, and you have a good intention. And that was the only reason I was willing to sit down because I know that and for the most part, when people do use that word, they’re not interested in changing because that’s just how it is. But see, but you know, it’s true, like the word, the word has the power of the past, but the past is limits and we go forward and we move forward and whatever and make those changes. And once we know better, we do better. And we can let go and progress as humanity as caregivers as advocates, whatever path we’re on. And I’m so happy that we pushed through the challenge of this conversation.
58:01
I think we said some really important stuff, actually. I think it was really feisty and fun!
58:06
I think you’re probably feisty Lynette!
58:08
I’m a little feisty. I’m the Brain Broad!
58:11
I think the fact you use broad in 2020.
58:14
I think that was a warning right at the beginning.
58:18
I’m just really happy that we continued the conversation, thank you for making time for us.
Thank you have a great day.
58:24
Okay, bye bye.
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If We Knew Then - A Down Syndrome Advocacy Podcast 