Becky West & Power to Marc

Join us for an informative episode with Becky West and Power to Marc. In this episode we learn about Becky's family and how her journey led her to work at Power to Marc, where she spreads the news about techniques from Practice without Pressure. We discuss the dangers of restraint of individuals with Down syndrome for medical procedures.

Transcript

faith 0:01

Hi everyone. Welcome back to the Texas Down Syndrome Chat. I'm your host Faith Varrio, and with my co-host Magali Diaz. Hi Magali.

magaly 0:08

Hey, faith. So great to be back.

faith 0:10

Let's jump into our D-S-A-S-T-X minute where we talk about all our upcoming events that are happening. So this summer, the one thing, that's really going on is our summer camp. So that's what's really taking most of our time during June and July. So another thing we wanna talk about is our walk. Walk and stroll is set for October 25th, that Saturday from nine to 1:00 PM at River City Community Church once again, and registration officially opens Monday, June 9th. At 10:00 AM So if you guys are ready to get your teams ready, you can start registering at$10 and that will go on until August 4th. So if you wanna get registered for only$10 be sure to do it within that time. So yeah, let's jump into introducing our guest.,

magaly 1:01

so today we're having Becky West. She is a proud mother to two children with Down syndrome. They're, 26 years apart. Sam is older and Luna is six, he's 32 Becky is also the director of family caregiver programs at Power to Mark, which is, what she will be speaking about today. And, she considers it to be her dream job. Her position allows her to support fellow caregivers, alleviate the challenges associated with medical trauma and advocates the dignity of individuals with disabilities, so please welcome Becky.

faith 1:36

Hi, Becky. Hi there. How are you today?

becky 1:39

I'm great, thanks. Thanks for inviting me.

faith 1:41

Thank you for coming in today. I know it's a early Monday, but we're really glad, to have you. Both you guys had both being sick and then having a child sick, thankfully you were able to come today and we're, so glad to be able to speak with you today. So to start the conversation, what are your summer plans this year? Do you have any?

becky 1:59

We are for once, have a very low key summer and I was, someone asked me that question the other day and I said,, we don't have really any big trips planned, and I'm so happy because we get to just be at home and. Work in the yard and relax and not frantically go here and there, which is what we usually do. We are campers and so we're gonna no doubt camp a little bit here and there, but no big trip. For me to stress over. And so I'm really happy about that. That's always fun and a good time to be able to spend time at home and, not have so much.'cause even the summer vacation's relaxing, it's still stressful when you're planning it until you get there probably. Yeah. And then coming back it's a little more stressful too. We gotta have any plans. My summer plans will be one week in Dallas, and that's pretty much it. I feel like that's so stressful that I have to take the rest of the summer. Pretty laid back. My kids have been off with me for the past couple of weeks and, they'll start some summer camps here or there, but not too many either. I didn't wanna be driving all over town. I also wanna give them some days of boredom, what about you, faith? I really don't either.

faith 3:09

I think this is, last summer I had a big trip. My sister got married last year, so now she has a baby this year. So hopefully I go more trips to Austin to go see. The little one a little more often the summer. So I'm excited for that. But with that, let's, jump into this episode and learn more about Becky. So Becky, can you tell us a little more about who you are and, and your family? Sure. So I'm Becky West and we've lived here in San Antonio for, this is our 10th year. We're celebrating 10 years in San Antonio this summer, and we've absolutely loved it here. And, I have five kids. Seven. Technically I call it seven'cause we have two that have married in. And I have one grand baby, so that is super fun. Our family is associated with the Down Syndrome Association of, south Texas because we have two kids with Down syndrome. My oldest Sam is 32 and our youngest Luna is six and. Like I say, Sam was our first child and had him in our early twenties and we're really, we had a diagnosis at birth. We did not know before he was born. But we had thankfully a very gentle birth story and being told that he had Down Syndrome and it was, not a traumatic thing for us, like it is for a lot of people. I'm not gonna say it wasn't. Surprising, but it wasn't, awful. Like some stories that I hear from moms that are really unfortunate. And we just decided to love on him as much as we could and. For a while thought, I don't think we'll have any more kids. We'll just make him Super Sam and pour all of our time and energy and money and everything into him. And we did that for five years before my husband and I decided, you know what we're really,'cause my husband and I both have siblings and we thought, we're really not doing him a favor by not giving him, some built-in friends and playmates and our siblings mean a lot to us. And so we thought, okay, we better. We better have a sibling. And so we did. Our daughter was born, five years after Sam, and she has been like his second mama and is very protective of him, and,, has been a wonderful sister for him, and then had two more surprises kids. And we had our four for a long time and moved here to Texas and. I, when we moved here from California and when we lived there, I taught school and so I was a school teacher and. Had our fourth child, Tommy unexpectedly, when I was teaching. But anyway we felt like, okay, we're good and we always wanted to move to Texas. I don't know. We came here when the Down Syndrome Association had their conference here years ago with Terry. Because I listened to the podcast with Terry the other, yesterday just to, see the format of how you guys do this. And, that's why we're here is because we came to that kind of last minute. I heard about it and it's oh, we haven't been to a, NDSE conference in a while.'cause over the years we've been to many. We're like, oh, it's in San Antonio. We've always wanted to go to San Antonio. So just last minute we found babysitters and we just, my husband and I came down here and before the weekend was over, we were looking for houses and we just were enthralled with San Antonio. That didn't work out at that time. That time, that was, I don't know, 15 or so years ago. But, we knew that this is where we wanted to land eventually, and it took us a few years for the stars to align and make it happen. Once it did, we came down here and now we know why, because we were supposed to come down here and add to our family. And that is, our daughter, Luna. So we became foster parents several years ago and ended up, fostering a whole bunch of kids and babies and decided, you know what? We've had enough. We need some sleep.'cause we had a bunch of newborn babies right back to back and they always, they came and went and we decided to, resign. We thought, okay, maybe we've done what, what we were supposed to do with foster care and. They called me, like the day after I resigned and said, Hey, we have this little girl in the hospital who has Down Syndrome, and you told me years ago, this is the intake lady. She said, you told me years ago that. If we ever had a child with Down syndrome come into care that you would, you would absolutely foster that child regardless of the age or the situation, and so she's I know that you just quit, but can you just take one more? And all of our foster babies that we've had, they came and went, they went to an aunt or a grandma or sister, whatever. And and we were not looking to adopt anybody'cause we're older, and we. That was just not what we were thinking. And so anyway, we, I went and picked Luna up and she stayed forever. She became adoptable and we were just absolutely head over heels with. In love with her. My, my other kids were, and, certainly my husband and I were, so she, came to stay and the year my husband and I turned 50, instead of going on a cruise, we adopted a baby. That was our big plan, was to go on this big fun cruise together. But we decided, no, we're gonna, we're gonna adopt a baby. And it is been an exciting. Tiring six years, having her. But she is just the light of our family and she and Sam are just best friends and it's just been the right thing. So we knew that's why we were supposed to come here. Plus my two, my second and third child found their spouses here we know that this is where we were supposed to be. And the other thing that I feel like we moved here for is to find the organization that has really changed our lives. And, I know that you guys wanted me to talk about Power to Mark, which is a non-profit that I work for now. A little backstory of how I got involved with Power to Mark is, we, one of the things about raising a child with Down Syndrome that I was just. Not prepared for was the restraint that happened when I would take Sam to medical appointments. It started when he was a toddler at the dentist and he was restrained without my knowledge. And I didn't know that had happened. I'm a young mom. I didn't have any clue what I was doing, especially, with the child with special needs and they took him back at the dentist. That night I found marks on him.'Cause they told me, you can't come back. You stay out here in the waiting room. I thought, other moms are going back, why can't I go back? Again, just super young and naive and I was like, you do what the doctors tell you to do. So I let them take him and that night when we were putting his jammies on, we saw all these like marks and bruises on his arms and his, tummy. And I put two and two together and realized they had strapped him down.'cause I was curious.'cause I, I mean he's an active little guy, I'm like, how on earth are you gonna do this? That's how they did it, is they, they put him in a path, PO source somehow tied him down so that he couldn't move and so they could do the dental work. And he was really upset when he came outta the office. And I just thought, they just worked around it, and he's upset'cause he had to do something hard. But over the years, that happened a lot it would just be the expectation. Some things got better. Like dental appointments got better and he didn't have to be held down so much and other things got better. But the one thing that we just could not get. Figured out is blood draws and Sam has to have a blood draw every year. And'cause it's very typical with children, with down syndrome to have thyroid issues. And so you need your blood drawn at least once a year and. That was just always terrible. So we would go into his, his well check appointment and over the years I'd have doctors again. You go in and they see Sam, especially if it's a new doctor and they're like, oh, okay, we know what we're gonna have to do. We're gonna have to hold you down. They'll call the male nurses in or whatever. And I participated in that a lot and I hate that I did that. I have a huge hole in my heart. Regret of doing that. But I didn't. There was no other choice. There was no other option that I could see. We tried bribing him. We tried everything. I told him one time, I will literally buy you anything in Walmart if you will. Just put your arm out for the blood draw and not. Have to be held down, And that didn't work. We tried distracting, we tried everything. And it always ended up with him being held down. It got to the point where I couldn't go anymore because it was so traumatic for me. I would make my husband take him, and my husband would, lay on top of him. Sometimes my teenage son would go with him and help him too.'cause I thought, maybe I hate to have strangers holding him down. But then also I hated that people who loved him had to hold him down. It was just like a no win situation was, a really yucky part of life with a person with a disability and a developmental delay it just never got better. There were years that I would just skip appointments. There were years that I just thought, you know what, he's fine. He looks great. We're doing fine. There's, he's not got any problems. I just thought the blood draw is worse than anything, that they might find. I dunno. But he did have heart surgery as an infant, like a lot of babies with Down syndrome. So he had to go to the cardiologist and he had to. Be followed. And I always felt like such a bad mom when I would skip some of those appointments.'cause it's like I just cannot deal with another, EKG or whatever.'cause he would just fuss and would not cooperate. But then I happened after we moved here a few years ago, I happened to be in the right place at the right time and I heard about. An organization called, at the time it was called Practice Without Pressure, and this woman, Deb, had a son with Down Syndrome, just almost Sam's exact same age, a little bit older, and she had the same experience as me. She had have to, had to hold Mark down for a lot of things. She had one particular appointment that was awful and she just put her foot down and said, stop. They were doing allergy testing, with all the pricks that you have to have. And Mark was just hysterically crying and she was just like, I, this is abuse. This is wrong. This is so wrong. This just stop. So she stopped the thing on the way home, she's told Mark, she said, I'm so sorry that I let that happen. I will never let that happen again, ever. She said, I don't know what we're gonna do, but I'm gonna figure this out. She had the right kind of background and the right kind of, chutzpah. She has a lot of chutzpah, to make it happen. She spent the next 20 years refining what I found. In practice without pressure that she had she had cracked the code of how to help individuals with cognitive delays. Participate in their own care without being held down. For me it was a miracle. Like it was just an absolute miracle. When I heard about it, I was like, wait, stop. Tell me more. I immediately enrolled Sam in the program here that, offered it and he went through it. After about five practice sessions, he was able to get a blood draw with zero restraint. That time I got to cry. Happy tears instead of, trauma tears watching him participate in something that we have just battled his whole life. He was 29 when he got that blood draw with no restraint, which means decades of him being held down and having something done to him against his will. I get a knot in my stomach when I think about it now because what I would give to go back in time if I had this and do it over again, but how blessed I feel that we found it here, and I lucked into it has just been such a blessing because this methodology called practice without pressure, it bleeds into other areas. It's not just for the one procedure that you start practicing, it's not just for blood draws. It's not just for brushing your teeth. I have learned how to be after going through this and training basically I, Deb, to let me work for them because it changed our life so much and it helped so much. I'm like. Why don't people know about this? Moms need to know. Other moms like me need to know that there is a better way because no one ever gave me a single, alternate way of handling this. It is a better way, a kinder way, and it empowers the individual to participate in their own care. I don't know about you girls, thinking about going into a doctor's office and having somebody, strap me down so I can't move, and then doing something to me against my will, it's a terrifying thought. Even if it was a medical necessary, thing. No one's ever tied me down and done something to me against my will. And I think Sam has had that happen over and over, it just makes me sick when I think about it. Thankfully. He's pretty resilient and doesn't hate me, but I wish I could take that away and it makes me so happy that now I have taken it away. That's not something that we have to do ever again. Sam has had multiple blood draws. He's had a ct, he's had EKGs and echoes at the cardiologist. Multiple things because I have learned as. His mom and caregiver, how to prepare him for these, that's what makes all the difference, is the preparation. This is not some magical pill that, Sam swallows before we go to an appointment. I have learned how to build that capacity in him so that he understands what's gonna happen. He has practiced. There's no surprises. There is very low stress. We keep, that's one thing we do. It's very low energy, very calm. There's a lot of little nuances to it that it's oh yeah, why didn't I think of that? But I didn't and de thought of all of it, and put it into this beautiful methodology of practice without pressure that can be used by anybody. I am really passionate about making sure other moms know about this. Because I think back to the times that I either sat in the waiting room and cried'cause I knew what was going on or. Helped hold him down and cried and just felt terrible afterwards. After trying everything else, just feeling everything that I could personally think of. Feeling like a failure in that department. It's like we worked so hard to, to provide him with everything I homeschooled him for a long time. We put him in private therapies. We did everything that we could. To help him be as successful as he, could be. But this thing just was just this thing that we could not figure out. And so I feel so grateful that Deb put the time, the two decades into refining this that she now has it into a course that can be taken by other caregivers. To learn how to prepare yourself, your person, and the professional for the appointment because it's, it is more work. I'm not gonna say it's just this easy peasy thing but for me it is 100 million thousand percent worth it that I don't have to restrain Sam anymore and even more. Now that we have little sister moving up, she's been through it. She went through, she's six now. She went through it, when she was three. Barely three she got her first blood draw without restraint when she was just a toddler. So this approach works for any age, any disability, any procedure because Luna has also. Received, vaccinations she goes to the eye doctor, the doctor always tells me he's so cute. He's always says, mom, you need to take a picture of this because she's so cooperative. He works in an office where there's a lot of. Children who come in with special needs and this never happens. You need to take a picture. And I'm like, duh. That's what I do for my job. I should take a picture. So I have this super cute picture of Luna at the ophthalmologist. Like she's got a hold of that big thing, that you put in front of your face and very actively participating in her own care and very proud of herself, i'm just so grateful to know that she will never have to go through what Sam went through I won't have to go through it with her. Because quite frankly, when we were deciding whether or not to adopt her, that was on my list. Can I do this whole thing again? And she's a girl, she's gonna need, woman exams. In her, life. We didn't have to deal with any of that with Sam, but to think about having to hold her down while she got, a well woman exam, it just, no I was just dreading that whole thing about, raising a girl who has a disability is different. And so I'm just so grateful because practice thought pressure works with, women exams, they've used it with many women. Thousands of people have been through it, and I just, I'm so grateful that I've heard about it that now that I'm involved with it, and now my job is to tell all the other moms dads grandmas and aunts everybody about it because it, almost as important as anything else, yes, you have to go to the dentist, but we don't want you to go to the dentist and have to lay on top of your child. And last time I took, learned to the dentist, maybe a year or so ago, I was sitting in a new office. I'd never been there before, and talking to the dentist about what we do and what we don't do, he was examining Luna and I was listening to all these toddlers around us just screaming their heads off and their moms were either, laying on top of them or they were pacing in the hallway upset'cause they could hear their child crying. And I just thought, Oh my word. I just wanna go and hand my card to all these moms, and say, it doesn't have to be this way. Because this approach works with everybody. I'm working right now with two, typically developing children who just have a particular fear about a, a certain procedure. So we're working with them. This does not have to be just for people with disabilities. This really is for everyone. I just feel like I want all my mom friends to just take this, whether you have a child with a disability or not, so that you can just know.'cause they're all like, oh yeah, I gotta hold, so and so down my, run of the mill 6-year-old needs that, I don't downplay that, but for those kids, a lot of times you're, you're typically developing kids who do get restrained.'cause it happens a lot, especially for toddlers at the dentist. They eventually have the processing skills to understand. Or be able to talk through it. Like next time mom's gonna take me to the dentist and mom can talk to, junior and say, Hey, remember when we went to the dentist? Remember, you have to open your mouth. They're going to put this thing in your mouth and look around and it, that it didn't hurt. Do you remember that? It didn't hurt. Do you remember? It wasn't a big deal. But you remember that I had to hold you down and hold your arms down and then. You know that nice lady had to hold your head still.'Cause this time, it doesn't have to be that way, it's like you can just open your mouth and do it you're typically developing. Child will catch onto that eventually and they'll work their way out of it and it won't become something that stays with them through their teenage years and their adult years. It's maybe something they don't even remember. When they grow up. But for people with developmental delays, that trauma builds on top of each other every time you go. And then you get to the point where you just pull up to the doctor's office in the parking lot and your child or individual is going to have a meltdown because they know why they're there. They know they're gonna get held down and they're gonna have something done to them against their will. So that's the difference, of working with somebody with a disability who we're trying to, avoid all that trauma or heal from it.'cause that's what we are doing. We're healing from all those years and it's so cute.'cause now Sam will do something and he'll tell me, mom, I did it and he's so proud of himself.'cause he understands now that we're gonna go do something that we don't love to do. Who loves to go to the dentist? Who loves to go do medical stuff? Not many people. And I tell him about that. It's oh yeah, I have to go get a blood draw. I don't want to, but, do you wanna come with me? Do you wanna watch?'Cause he's come with me before and watched and he is, he's all proud of me. Mom, you did it. I'm so proud of you. But he knows now that I'm not gonna pull up to a place and kind of sneak him in and everybody grab him. There's none of that anymore. Was always such a yucky. Feeling, situation that now he knows, and I've told him, I'm, I will never hold you down again. You can do this. You have learned how to do this. There's other things, that he does that I have to remind him, how to do this. Do you wanna practice again? To see the. Confidence in him and the empowerment that he has because he knows if we go to a doctor's appointment and something comes up that he doesn't wanna do and he's just not having it that day, that I'm not gonna force him. I'm not gonna make him do it. And we got a CT about a year, ago. He had to have, an ultrasound too. He was having some tummy issues we were trying to figure out, and I thought, okay, this is gonna involve a lot of poking and prod and to figure out, why he's having these tummy issues. But he. We practiced the ultrasound at home and then he went and he did it, and I reminded him, you know how to do this. We practiced this and we talked to the facility.'cause I learned how to do all that stuff. I learned how to not be intimidated by medical professionals to work on a level that, okay, we're both on the same page here. We both want to help Sam, nobody wants the trauma of holding him down. Your staff doesn't want the trauma of doing that. And they're always like, oh my word. This is amazing. And so I always have my card with me.'cause I'm always check this out. Because there's just so many people out there who were like me and they just think there's no other option. If I have to get this blood draw. This is the only option and it's not true anymore. And so that's my job now is just. Talk telling people about power. Power to Mark is the name of our nonprofit. Practice Without Pressure is the name of the methodology. I know it's confusing. And then we have a third branch called the Mark Dsky Institute, the M-G-I-M-J-I, which is where you take the courses. So if anybody listening wants you know to find out more, please go to Power to Mark. And it's Mark with a c mark, mARC, and you can learn more about it on our website and sign up for a class, an online class. So all the moms and dads out there, whoever can go enroll in this course. And it's just like learning. Let's say you wanna learn a new math, and you go sign up for a class and you learn a new math, right? It's just like that, there's chapters and little I feel like there's little quizzes. Maybe it's been a while since I've taken it, but it's probably one of the best things I've ever done as a parent is to decide to invest the time and effort that it took to learn this and to implement it with my kids. The best thing I've ever done as a parent to promote a happy. Healthy trauma free life for my kids and I've used it with all my kids, but mostly with Sam and Luna. It's just been such an amazing thing. So that's why I am here to share. Yeah. That's amazing. I have a lot of friends that. Restrain their kids. I have even some of the kiddos get, prescribed an anxiety medication. Because the kiddo, as soon as you pull up to the doctor, they already know, and then they flop and drop. And then they're so like big and older that you can't just pick them up. We're adults and sometimes I get anxiety seeing needles and. Stuff too, but I just, I look away, right? Like I, I know what I have to do. You can process your way through it, right? Yeah. Whereas somebody with a developmental delay doesn't have that skillset typically, too. And I met a lot of families. I've talked to, I don't know, probably thousands of moms at this point, at different conferences that I've gone to and. Speaking events, and I'm always really thrilled to hear that mom who says, we don't have a problem with that. We've never had an issue, but they love to get their blood draw, or they love a vaccination, they love the attention, or they love the this or the that. And it's sweetheart, you are blessed because most of us don't have that. Most of us are, barely surviving these appointments. Yeah. Or avoiding them, which is equally bad because then what happens? Let's say you avoid dentist appointments, what's gonna happen? Cavities. Yeah. And then what's gonna happen? They're gonna have to pull it out. They're gonna have to either pull it out, getting a cleaning is one thing, but getting a cavity in, yeah. Getting a, the drill and the polishing and all that. That's a, that's on a whole other level. That's part of the problem. That's the cycle that you can never get out of. Okay, are we gonna go in and lay on'em and force'em to get their teeth cleaned or whatever and or do we just not go and then we have a mouthful of cavities and then they have to sedate my child to do dental work on them. But what happens with sedation? How do you get sedated typically with a needle? So that means we have to restrain to get sedated. To have something done and that builds absolutely no zero capacity for that individual. They're just a passive, just like when they're being restrained, they're not learning. They're not, and people with disabilities, we believe firmly, everybody can learn. We, one of our top things is we meet people where they are. Everybody is somewhere. And so what we have to do is figure out where you are and what we can do to move you forward. Yeah, and I have seen it. Were countless times, and every time it just gives me happy tingles because it's like when you see that person who couldn't do this before.

becky 28:10

And now they can do it. Somebody who wouldn't allow their teeth to be brushed, or somebody who had to be put in a headlock to get their teeth brushed by their mom or dad at night. And now they have learned how to participate in that. Now they happily open their mouth and get their teeth brushed. Then we're avoiding cavities and we're avoiding, the stress of sedation.'Cause we are, they're also having, more studies about sedation and how it affects people, especially people with IDD, that every time you get sedated it takes a little bit of your, cognitive ability, people with IDD don't bounce back from sedation like people who don't have IDD and that it's just not good for you. So those people who are relying on sedation every year for that dental appointment those sedations are adding up and it's just not good for you. It's not good for anyone to be sedated time after time, but especially in this population, it's just really. It's not good for you. You lose a little bit of yourself every time you get sedated. They're finding, which I thought was a little terrifying'cause who wants that? And, and it's not just teeth, right? Because then our kiddos, some of'em need surgeries. And obviously for surgeries you're gonna need sedation, right? So they're already getting sedation. Because of other things. Tubes in their ears. Exactly. Tons and adenoid surgery, like things that are really necessary medically. Yeah, I'd rather do sedation for those really important things, than, oh, okay. I can't clean their teeth. Let's sedate her. And I talk to countless moms who do that. They just, oh, we just sedate. And it's okay, how do you get them sedated? And so they, it's more traumatic than what you really realize. The sedation, it's not the best. Way to go. They wake up confused. I've only had one surgery in my life and it is not good to come outta sedation. Yeah, it's awful. Like you're out of it. You don't know what just happened to you. It's so scary. Yeah. So parents can find out on your website. I feel like this is something that every parent needs to know. Yeah. Gosh, I can think of the last time, my daughter got vaccines. It was around her 10th one and. Like you said, they see Down syndrome and they're like, let's go get in three nurses. And then three nurses come into the room and then, they see the needles, right? Because there's three that she has to get. Man. It is not good because then the kiddo feels the anxiety of like, why are all these people coming in? Exactly. And our kids are strong. You don't know how strong they are coming that little muscle tone everyone talks about is a little deceiving. Because both Sam and Luna are very strong. They may have low muscle tone, but that's a different thing than. Being super strong and when your daughter sees all those people come in, her anxiety is probably going ding, yeah. And that's why one of our things is we have low energy in the room. We don't want three people coming in, and we're gonna talk to the doctor about that and say, we don't, this is what we're gonna do. We're not gonna restrain. I want one person to come in, we're all gonna sit down. So nobody's hovering over her.'cause that is also very intimidating. So there's just all these little techniques and strategies that when I learned them, it makes total sense. But I didn't put all the pieces of the puzzle together. And that's what this, methodology does. It has all the puzzle pieces and it teaches you how to put it together. In a way that keeps the environment calm and the person prepared. And empowered, Luna knows that if I were to take her in. In fact, we went in not too long ago for a flu shot and she was not feeling it that day. And the nurse, I think, thought I was crazy.'cause she's just just hold her down. Just put your arms around her because when they're little, that's what they, it's called a comfort position. When they sit on your lap and you wrap your arms around them, they call it a comfort position to make it sound. Happier, I don't know, easier. It's restraint, it's total restraint. I told her, I said, we don't restrain so we'll be back another day. Because she knows that she has that power. And, probably she was five at that time. That's a really amazing thing. I'd much rather she have that power than a flu shot. The power to me, her self-determination and advocacy for herself is so much more important than a flu shot that I was like, okay. She's not feeling it today, but a little back up, just a little bit. When she had one of her well child checks, I don't know when she was a toddler and we had gone through, she had been through practice without pressure and I had talked to her, you're gonna get a vaccination instead of in your elbow, you know it's gonna be right here and. I told her that we're gonna pull your thing up. So I prepped her a little bit before she'd already had a blood draw and stuff, so she was already had the, confidence going. But the nurse came in with the tray and she saw Luna, and she's okay. So I'll have her sit in your lap. And that's another thing we don't do. Everyone sits in their own chair. So even at three years old, when Luna got a blood draw, she was not sitting on my lap. She was sitting in her own chair. She is her own person. She ha she deserves to have her own space. So I said, no, she'll go sit in the chair. You can, she'll sit by herself. And she just looked at me like. You are crazy. I'm like, Nope, she can do it. So Luna climbed up in this big chair, this enormous compared to her.'cause she's little for even six. She's little. But anyway, just seeing her in that chair and she just looked at the nurse and looked at the tray, looked at the stuff and she is, she went like this and pulled up her sleeve and the nurse gave her the shot. The look on the nurse's face, she turned around. She's what kind of, voodoo magic have you got going on here? And I said, I told you she knows how to do it. She has learned, she has been prepared, and we do not restrain her. She knows that. If she wasn't feeling it today, we would've come back another day. Again, that's where the time comes in that you have to be, when you start PWP, you have to be prepared for that mind shift because you can't be wishy-washy. You can't be, I promise I won't restrain you. Oh, but if you don't cooperate, I will restrain you. You have to. Building the trust is one of the basic. Cornerstone things. A PWP is you build that trust so that your person in all areas can trust you. But especially in this high stress situation where we're going to the doctor and I might get something that hurts, you have to have that trust built. So it has bled into other areas of our life, meaning I try really hard to. Keep my word with him, if I say we're gonna go do this thing, we're gonna go do that thing. And that's hard as a mom. And then you add in, going to the doctor and you have this appointment and you wanna get it done and you don't wanna come back.'cause we're all super busy. But that is just something that has become the doctrine of our life, is we don't restrain anymore. And there's no procedure that is more important than my child and my, the relationship and the trust that I have with my child. And I always say that it's like, if it doesn't happen today, we'll have to reschedule so that they know. That they have, they know what to expect from me when we come in and from the situation that if it doesn't work out today, we'll come back another day, it'll be okay. So it doesn't take them by surprise. That's a part of the course as well, is learning how to be, I'm such a better advocate now than I was when Sam was little. But I feel so blessed to have this now that it, my life is easier. Having this, even though it may take more time, but overall, my life is happier, healthier, because this is not hanging over me. I'm not worried when I take Luna to the doctor that we're gonna leave all sweaty and crying and upset and her mad at me. You know that doesn't happen because we've turned the negative into a positive. We've broken that cycle and it's just been such a gift. That is so powerful. That's why it's called Power to Mark. It's so powerful it was Mark's mom who came up with this and Mark was the impetus to, for her to develop this. This is something that does not exist. This is a new entity in. World of healthcare and it has not been easy, implementing it and getting people on board, because a lot of professionals see it as, oh, it's gonna take more time. What does that mean? Time is money, right? I have to go in here and I have to, be patient and, take it slow and everything, but it's okay. And I've met so many medical professionals that just are so excited about this, and they, because they hate doing it too. They hate holding people down. They don't wanna do that, but that's what they've been taught, right? That's all they know is, oh, you won't cooperate. Okay, I'm gonna have, I will sit on you. It's, and it's sad, but it's just such a refreshing thing to have a solution that works.'Cause this works and to have it be such a powerful, impactful thing. But still, it's an uphill battle all the time, with pushback and people who don't believe it will work it's just give it a try, I promise. You'll see. It's really great to hear, about it and how amazing, it's worked for you and stuff because as just someone who, I'm not a mom yet, but like even. Thinking if I ever wanna become a mom. And it's I remember when I was a kid, I got restrained, that's the word. Once,'cause I hated vaccines. It was like the scariest thing to me. And I remember the feeling of it. The way I processed it was just like, if I have to get the shot, if I don't, then they'll do this again to me. So that's how I was able to be like, okay, just, just whatever. That's how I get it over with. But as just someone who like one day hopes to raise children, people like you had to go through, but created and Deb, created and worked on to help like for future generations. And future moms and future dads. Who might be going through the same thing but have a different. Alternative way of doing it. And so hearing you, I do believe in it and I do believe there's a process of learning and preparing yourself.'cause even when I go to the dentist now, like I get nervous going to the dentist, but I have prepare myself mentally the sounds especially that come out when they're like drilling or anything. I dunno. Anyone who loves that, so especially with our community, like it was just an easier way of just like automatic what you had to go through and what, like you said, bring in three doctors.'cause when they see, your daughter and it's just I don't know, it's just such a great thing to see that there's something like this now to learn and give a chance to, and see what can really change for, the future. We just wanna be better and do better. Because we knew it wasn't like a good thing to do. We were just. Told by professionals that it has to be done. They have to get their blood draw. Because we have to check this and we have to check that, and we have to clean out her ears because there's so much wax buildup. And we're gonna papoose the child to do this. I mean, now Audrey walks into the ENT and she lays down by herself and they don't do anything. And she knows the little vacuum's gonna come out and they're gonna clean her ears. But I just thought maybe that is happening because of age. She's about to be 13 just this last December was her last blood draw and she was iffy about it. And I was like, you almost to the point where like we might have to come back because she was very nervous and anxious, but we made her decide. And then after the blood draw, that little stinker says, I wanna go get my ears pierced. Daddy's gonna take me to go get my ears pierced. And I'm. You just went through one traumatic experience and now you're deciding you want another one. She's I'm on a high right now. I love that. So it wasn't like prize for getting her blood draw or anything? No. Like she just decided I got this. See, so she had that confidence built, that it's oh, I had that all built up in my head. It wasn't that bad. So maybe getting my ears pierced will not be that bad. But one thing I wanna share is, so Mark. Who is 34 now, he had to be held down all these times in his life. But he has tattoos now. Wow. So he, here's the kid who couldn't get through allergy testing. And now after, going through PWP and being empowered and. Knowing that he's his own person and can make decisions. He decided one day he wanted a tattoo. And I'm sure Deb was like, you know how they give tattoos. And he has more than one. Wow. So it's, it wasn't something that he went and got part of one done. Like I probably would, yeah. Yeah.'cause that hurts. Yeah, I've never had one, but I can imagine it'ss painful. That's amazing. Yeah. I don't have one yet. I have been wanting to get the, like a down syndrome, three little arrows. I've been wanting to do that for the past 12 years. I just never get around to it. Easy to put off. Yeah, exactly. Yeah. But like I said, it was just great for me to hear this. It's just like someone who does, didn't even know stuff like this existed. I mean, I did from, working here, but just hearing more about it. So I know a lot of our families are really, they listen to this and they take a lot of feedback and information and, I think that's why Magali and I wanted to bring you on because I actually learned more when you guys spoke at our conference this past year and I remember I sat in there and I was like. Wait, what? There's just a whole thing that can help our families out because I know it's not the easiest thing to go through, and we do a lot of things, to help within the education system, and it's like just as important to do within the medical, things Yeah. I feel like it should be right up there with speech therapy and PT and ot. Because it. Does cause such damage when, and more and more studies are coming out about the trauma that it causes and the problems that it causes. But, for me, I just think why aren't we teaching this right along with how to walk right? Because walking wrong is not gonna cause you so much trauma. As, if you miss pt, let's say, and my husband's a PT by the way, so I'm all for pt that's our vision, is to someday have power to mark centers everywhere where people can come in and bring their child if you don't wanna learn it yourself. Right now we're just this tiny little baby nonprofit but we have big dreams of making this go big so that people all around the world,'cause this happens everywhere, happens every day. People don't wanna talk about it. I've had a lot of tears when I've gone to conferences, I always have tissues, because moms are like, wait, I don't have to do that. Even talking about it causes tears because when someone you, when you've been through something really terrible and you think you're the only one doing it, for Sam, I'm like, maybe I'm the only one doing this.'cause if it was very lonely, I didn't talk to anybody about it. In fact, when we started this, my adult. Like nieces and nephews or whatever, who grew up with Sam were like, we had no idea you were holding him down because they don't know. Yeah. And it is not something that you talk about, is it mag Like moms? Do not. You don't, yeah. What did you do to hold down your kid, to get their ears cleaned out or whatever. It's just not something you wanna talk about because it's, I felt ashamed. I felt embarrassed that I couldn't figure out how to make my kid do this. And I felt ashamed that I was holding him down and that he would be so upset and I just, it just was not something I wanted to talk about. And so it's like this dirt, we call it the dirty little secret of the medical community because it is, yeah, it happens all the time, but if you don't have a child or a sibling or you have no idea that this is going on and it is rampant going on everywhere. So anyway. Back to our dream is that we, right now, the easiest thing for us to do is to teach moms how to do it because it is completely teachable. Teach'em how to become a practice specialist and work with your child. I feel like it needs to be included like almost like in our welcome bag for Yeah, for sure. You had a baby zero to three. Hey, you need to learn about this before you start restraining. Yeah. It's all about your kid learning. Yeah. It's all, you don't know what you don't know. Yep. And I didn't know what I didn't know until that day and I was in the right place at the right time. When I heard about that I can remember where I was sitting. I remember what I was wearing is one of those times, where it's like lightning struck and somebody plopped down in front of me what I had needed and prayed for. And it, it has been life changing for us. And I know people think that, oh, how could that be life changing? If you've never done it, then you don't know if you've never had to hold down someone that you hold so dear and precious and who is vulnerable and do something against their will. How do you teach your kid like, I love you, but I'm gonna let them hurt you. That's just very mixed messages to be sending to her kiddos. I know, oh, mom is here and she's allowing this to happen. And that's how I felt when I told you that Sam went to the, that dentist that first time, and that's how he looked at me when he got out. He looked at me like, where were you? I'm surprised I can talk about this without getting teary'cause I usually cry. I try not to cry, but, he just looked at me like, how, why? Yeah. Where were you? Do you know what they did to me? They held me down and did something to me. And, I remember that as well, very clearly. I remember that appointment and there was a lot of restraint of different things over the years that I probably have blocked outta my mind. But I remember that first one and his look on his face and so now that I know I don't have to do that and I, that won't be part of Luna's journey. It's just, it's a gift. Thank you so much Becky, for coming today and telling us more about you and, power to Mark. So if any of our families or any listeners listening right now, visit your website, correct? You said? At power to mark.com. Dot org. Okay., And just learn more about what they do. And again, do you have anything else, Miguel, you wanna add? No, just again, thank you. I feel like we need to help you spread the word because this is something that everyone needs to hear. Yeah. And I appreciate that. And if any listeners. Are, feeling oh, I know an organization. Every time I go to an event, I always have people say, will you come talk to our people? Yes, I will be happy to come and talk to your people because I, that is my, my goal. Yeah. My passion right now is to make sure, like I talk to people at Target about it because maybe I'm wearing a shirt and they're like, what's a mark? It's let me tell you. Yeah. Thank you so much and thank you for all that you do, for, our community. Thank you so much for having me. Yeah, of course. So guys, that's the end of today's episode. We're so thankful to Becky for coming out and speaking with us and talking more about her as a mother, but also, the her work at Power to Mark, so we're so grateful. And if you guys need to reach out to her, make sure to visit their website, at ww dot power to mark.org. Again, we're so thankful to her. So yeah, let's jump into our T-S-A-S-T-X recap, where we talk about all our ongoing programs that are happening in the upcoming month. So this month our summer camp officially starts, so a lot of our programming it's not happening. So like open play is not happening for those during those weeks so make sure to check out our calendar, our newsletter that just went out this month, as well as our calendar on our website@ww.dsastx.org. Al, are there any programs you wanna highlight? In July. We're taking off for a lot of our programs because we do know that people travel for their vacation. So we won't have parent education mom's out or Mom Zoom. But we will be back in August. So just, follow us on social media or visit our website for updates on our programming. Yeah. And with that, I have one more thing to mention. This will be my last episode that I will be on for the Texas Down Syndrome chat. I am leaving the D-S-A-S-T-X, and I'm so excited for the My New Journey that I'm about to start new chapter, but I'm so grateful and thankful for the people that I've got to work with and the community that I got to know. And especially working on this podcast with Mag. It's something I dearly will always miss and always hold dear to my heart. I just really wanna thank everybody and all our families who I've got to know throughout the years. It's been such a wonderful time at the DSA and I'll always be the number one supporter of this organization and for our community means more to me than. Anything really grateful for that. I will miss you as my co-host, but I know that we will still see each other, so I am happy for you and thank you for providing us with. This whole podcast since you've been here, this podcast wouldn't have happened if you weren't here. I'm grateful for that. Thank you guys so much for listening, and we'll see you in the next month.