Transcript
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 Nancy Gianni, the founder of GiGi’s Playhouse, and mother of GiGi!
0:42
Welcome, Nancy Gianni.
0:45
Hi, Nancy, how are you?
Good, how are you doing?
Great. We are so glad to have you on we thank you. We followed you for a while on social media and see all the great things you’re doing. You know, learned a little bit about your just through your website, and you know, different things we’ve seen on social media. But we just thought it’d be great to have you on because I actually was talking to someone through a Facebook page. And he had moved to Birmingham, Alabama, and but was from Chicago and had a connection with GiGi’s. And he was a little lost in Alabama and wasn’t sure you know what to do. And so it kind of brought to mind that, you know, supports aren’t everywhere. And so we really wanted to have you on to, to share that. It’s so
1:35
true. For me, it’s so wonderful that you are his foundation, he moved into an environment that doesn’t have any supports. And that’s what most people experience all the time, what he’s experiencing right now. And but at his core, he knows that the support should be there. So he immediately reached out, asking if anybody if we knew of any supports, if we knew of, of anything available, because he wasn’t he wasn’t receiving the support from even his local branch of anything. And so I feel like that’s a great revolution, like people are starting to understand that there are there should be supports out there. And there are supports out there.
2:20
Absolutely. You know, everybody wants to to be heard and be around people that are the same as them that have the same issues as them and want to be able to just be able to have that community. I think it’s so important.
2:33
Why don’t you tell us a little bit about yourself?
2:36
Sure. So I live in Chicago. I’m actually northwest suburbs of Chicago. And this is where the first Playhouse opened. And I obviously opened it after Gigi was born. So Gigi is my youngest. I have four kids. So my oldest is now 26. And Gigi just turned 21. So I’ve got I’ve got Franco who’s 20 then Romina. She is my niece that we adopted. When my sister in law passed. So she’s also 27. And then Isabella is 22. And she just graduated from college, she is going on to be a physician’s assistant. And then GiGi is 21. And she’s killing it in life. She’s, you know, 21 is so different. Even though you have these hopes and dreams for your kids, you also have a part of your heart that’s protected going, but it’s okay. If she lives with me for the rest of my life. I’m good with that. I’m ready for this to be okay. So like, even though I set her up, to be free and independent and be ready to do the things, now that it’s happening, that she’s fully in love, and has this incredible life ahead of her is gone on the weekends with her boyfriend, like, I’m like, Whoa, wait a minute. I don’t know. My mom told me that too. When I started doing spa she goes, you know, you’re setting her up to be extremely independent, not her own. I was and she goes, how are you going to feel about that? I go worry about that when it happens, but that’s what I want. But it is different when it does happen. So yes, she did it. Now I wish I knew then what I know now the life she was going to have and it was when she was one is when I actually she was actually four months old when I was putting her to bed one night. And that, you know, I was putting her to bed and I felt you know, she was sleeping, felt that low muscle tone. You know, just that heaviness that they carry around every single day of their lives every day. It’s like they have this weight pushing them down. But they’re always striving to be up and I remember pushing, you know, laying her down and feeling that low muscle tone. And I made a promise to her that night that I was going to change the way the world saw her and all of her friends with Down syndrome. And I remember I put her down and in that moment I like stopped myself like well now what the hell what does that mean? Like, what does that mean? How am I gonna raise like at that time I was like Am I going to raise a million dollars? And and what is that going to do? Like, what? How am I going to have an impact? Am I going to make her this incredible prodigy Am I just going to put every ounce of my energy into her? Like it was just trying to figure out, Okay, I just made this promise. So what does that mean? And the best thing I could think of was to, was to open up the world to her, to let people see their tremendous potential, not in just her not just grow her as an individual, but show the world the tremendous potential of individuals with Down syndrome. And that was, you know, really, I wanted that in my own community, too, because I had my other kids and I was so afraid for them. And you know, when Jude was born, there was so much negativity around the diagnosis. And like, I just remembered the way I was being treated, and not in a bad way. But medically, they took good care of me. But we were the cool fun couple when we got there until we had the baby with Down syndrome. And then we were put in that room, that, you know, there wasn’t the eye contact that we had before. There wasn’t the fun. You know, the fun was all went away. And we were like, Oh my God. And I just remember, they kept sending in the clergy to and I was like, Oh my gosh, is she dying? Like I didn’t know what was happening. But I knew that my life was instantly changed. I knew that. Even my friends were saying I’m sorry about your baby, and not you know, we’re giving me condolences, not congratulations. And my biggest fear was for my kids, like, I know, I’m gonna take care of this girl, I’m going to be okay. But what about my other kids, they’re going to feel what I’m feeling right now. And I can’t even deal with so how am I going to explain this to them. So really, the first GG is to was also for my community, so that I could ensure that that she would be included in my community. And then, you know, we opened up first and it was a Down Syndrome Awareness Center, just bringing that awareness to the beauty and potential in our kids. And it became an education center, that now they’ve grown into 58 achievement centers all across the country. So it’s, it’s been a wild, crazy, awesome ride. And you know, something everyone said we couldn’t do because, as you guys know, everything we do is free. So all of our programming is free, free one on one tutoring and literacy, math, speech therapy, fitness programs, career programs, social programs, and everything, everything is just free and and all the consultants would come in and say it’s, it’s not sustainable, you won’t be able to scale this, you won’t be able to get this out there. So that’s probably one of the things I’m most proud of is that we were able to prove them all wrong once again. So the the naysayers out there who would also doubt our kids also doubted me, and the tremendous population of parents, that believers out there in this world that want to change the world for not only their child, but for everybody, for anybody who may appear to be different. So here we are.
7:54
Talking about that diagnosis and the negativity that started just then, and how the fun left the room. It wasn’t just the opposite in that just the opposite. I mean, the fun, the fun, the fun, should increase. I mean, we know like like our podcast, if we knew then I mean, if we knew what where we’re at now, man, that diagnosis would have come across so much differently. And in fact, if our doctors had known, then it would have been given to us so differently. Yes.
8:22
And I had this vision, my mom ran our spread group or religious Ed, for adults through our church. So she ran our spread group at church for years. So I mean, I grew up knowing, you know, all her people in her group. And still when I got the diagnosis, I thought like, first I thought I will do it myself. Because Terry, which was one of for people who are adults with Down syndrome, who I was in love with. I was like, Maybe I brought this on to my family because I just, I was obsessed with Down syndrome, like, like, I would see somebody with Down’s. And I would like chase them down. Like that’s just as I did after Gigi was born to like, because I was always so I remembered it when I was laying there going, Oh my gosh. Well, this is my family. Also, what was my, my picture in my head was like this 1950s person with Down syndrome with their like, bangs cut the hair and tongue sticking out. Why was it the vision in my head? To this day, it bothers me because my mom taught me better. You know what I mean? Like, why did that vision come to my head? I don’t know, and why it stayed there for so long. But that was why I wanted to change that. That picture. I mean, the first thing we did was an awareness calendar featuring our kids in their beautiful faces. You know, I wanted everybody to remember a different face than what I remembered. And a different brochure like they sent me something dude was born in 2002. And I’m telling you, the stuff they showed me was from like, early 80s. For sure. Early 80s. I was like, I am not joining that club.
9:50
Yeah, totally. That picture. We’ve discussed that before.
9:53
Well, I think what what you’re what you’re talking about and when you were talking about when you receive the Diag, Gnosis the three main fears that parents talk about will my child live? What will the impact be? How am I going to do this? And I want to inform parents that the the misperceptions that were fed to us were like in that 1950s pamphlet driven by the medical community. And they created this misperception, and then they propagated it. And then they, they made sure that our, like, you know, now there are therapies, if if your vision was that you saw an individual with a tongue protruding, there are exercises, and there are surgeries, and there are things that we can do to support our children. But what happened was, when someone was born with Down syndrome, there were no therapies, given their age, they weren’t engaged, there wasn’t an education, they were denied surgeries and died. And so this system, propagated the belief and then sent it out to society. And then it was on us, you know, and that’s what we’re given as fact, and that’s what we’re given his truth. And then it continues to propagate fear. It’s all based in fear, not our fears, but society’s fears from a long time ago. And, and that becomes the reality. And then when we start to experience this path, it becomes guilt for us, because we think, Oh, my gosh, what, what were my thoughts, and we’ve talked to so many parents that they feel guilty for thinking, I’ll never play ball with my son, my child’s going to die, my child will have. But but that was, that was what was given us. And I think that’s what we’re trying to do is we’re trying to change that story. So when individuals receive a diagnosis, that it is the fun enters the room, the party enters the room, because aside from some of the challenges, the medical challenges that are there, but treatable with supports, and surgeries, and, but besides that real fear that every child, every child is susceptible to not just children with an extra chromosome. Besides that, it’s like the, the journey is amazing and transforming. And that needs to be the new story. Because the we experienced that to the we were every bit, hey, look at the and then when the diagnosis came, no eye contact, condolences. And, and one of the things I really like about your vision is that you say, it’s to see a world where individuals with Down syndrome are accepted, and embraced in their families, schools and communities. And I think what strikes me the most, because we we understand schools, because of the lack of inclusion, and communities for the same thing for the MIS perceptions, but the fact that we have such challenges in our families and in our in our, you know, in our friends, I think that is important to talk about, because as parents that’s like an unnecessary, it’s something that isn’t given to other parents, it’s something that’s disgust like, you don’t compare, you don’t all of these things for a neurotypical child, but the things that are given to us and said to us,
13:30
yeah, and a lot of parents had that same 1950s picture in their head to a lot of
13:35
grandparents, a lot of families, a lot of friends.
13:38
What you know, when a typical baby’s born, they don’t tell you what could go wrong, maybe your kid will have this maybe, you know, they’re like, enjoy your life. Our kids are born. And there’s like this laundry list of any thing that any other kid, somebody with Down syndrome had sometime in their lifetimes, and we’re hearing about it, that’s a lot to put on a new mom is a lot less. And I remember that, you know, there’s that book of what to expect the first year when you have Down syndrome. Like, I started reading that I’m like, oh, no, like, I am not reading this. But like, I remember I put it I was like I can’t. And then who because then I was afraid like, and I’m very much into self fulfilling prophecy. You know what I mean? Like, I put out positives in this world, because I expect but you know, I will things to happen in my way. And I’m like, I’m not gonna do any of this. I’m not even gonna look at it, because I don’t want to hear about anything negative. Listen, my other kids could have had other things. And I didn’t want to know and I remember going back to it a year later going, didn’t have that didn’t have that didn’t have that didn’t have that, you know, and it also puts the fear into these new parents. And that’s why it’s always so important to me, you know, choking, whatever it is. So these parents aren’t actually you know, even starting their kids on food because they’re so afraid that they’re going to choke that now they’re only accelerated like the process of them having speech issues even worse because they’re doing things because they’re afraid. And now that, you know, it’s just when I look at all that, the stuff that they do to these parents in the beginning, I’m just like, forget it, you have a baby, you have a beautiful baby, take that child home, and be the best, you know, be be that parent, you are for your other kids, you know, our kids need the same thing. They need love. They need guidance. You know, that’s, that’s what you need to give them. And just, they need high expectations. You know, for me, that was always the number one thing I can give you, I tell every new parent, and I’m so blessed to have so many new parents, but I tell every new parent who walks into a playhouse, you know, I know our kids are awesome, and adorable and so cute. But the harder we are on them, the stronger they’re going to be. Don’t give in don’t put that extra hole in the nipples so that they don’t have to suck so hard. Don’t make things easy for them. Because they have to work harder to do what comes naturally to the rest of us. So if we enable them, we’re only we’re hurting them. And I think it’s such an important piece for new families to understand that, because our kids are the strongest, they’re so darn strong. You know, when I look at, and they’re so determined, and their tenacity, like what they’re able to do and achieve completely contradicts what you’re told, lately contradicts what you’re told. So you tend to just, you know, let them get away with no, no, no, I’m going to be just as hard as you if not harder on you than the other ones. But then, you know, everything else that they’re hearing makes them think that you know, and grandparents, you know, same thing that they need to coddle them, and do no need to keep them just as another one of those grandkids and, you know, have those high expectations for them. So I agree with you and, and you know, the termination rate is where it is because of these of this same medical, you know, of the of the prejudice that’s out there. Now, and again, here’s what you have to think about too, is is these doctors, you know, we want to get to them in medical school. What they learn about our kids is about I remember gacha coin, who runs the adult on serum clinic, he goes, doctors are in about five minutes on Down syndrome, and what they learn, it’s not pretty, it’s not pretty, you know, you don’t want to say I want my kid to have that. But then, the other time, when do most of those doctors see our kids, when they’re sick, in the hospital, not when they’re out succeeding in life, or leading a dance troupe or you know what I mean. So they, they don’t have those opportunities, which is why we need to bring them to them, which is why Jesus, we are always out there fighting for within the medical community, giving them our calendars, whatever it takes, because we still have people out there and medical professionals who think our kids don’t deserve a place in this world. And I just found out I was meeting were opening, they want to open up TVs in Australia, they have a 96% termination rate. And she said it’s actually 99 Because 3% get through that don’t get tested that they don’t catch in the test. And it’s based off from what she had told me is based on the medical community out there, saying, you know, painting, the picture of what Down syndrome is your child won’t live past 10 this, you know, all these things that that just aren’t true.
18:08
And I was just thinking that, you know, every every parent receives, you know, the 20 week ultrasound and, and I was just thinking when you said that, because, you know, we’ve had friends from different areas, and they’ve been very sympathetic at first. And we don’t just receive that, oh, your child has Down syndrome information and how terrible it is. Every parent receives it. So how can we how can we test for it? So how can we not? How can we be surprised when a parent comes up to us with condolences when they’ve been led to believe that we have just been given the worst news ever? Yeah, they
18:51
when they got their test, they were rooting that the test didn’t come out positive, you know, so. So they’re like, well, oh, there, there are a couple that got a child with Down syndrome. You know, that’s the that’s we use because of all the fear. We’re, I mean, it’s all fear.
19:04
We’ve actually had at least two instances that pop right to my mind of individuals who were pregnant, who actually said to me, you know, but luckily, we’re just going to test and make sure that you know, but luckily, everything’s okay. Luckily, after we’ve
19:21
had Liam, and they go, Oh, we’ve had those tests. And they know,
19:25
Liam, and they’ll be like, well, we just want to make sure. And I’m like, I know exactly what you’re looking to make sure of and I don’t like your exuberance. But yeah, and don’t tell me tell everybody else, right. But don’t tell don’t. That’s rude. That’s just rude. You know? And, you know,
19:42
he’s not going to be like your son. Yeah, right. Right. So
19:45
we actually had someone say, but thank God it wasn’t Down syndrome. And I was like, hello. Oh my god. Do you what is what is the things that new parents are getting fear? That’s a fear driven response, totally fear and
19:59
the things that pair ants are getting new parents are getting not only from the medical community but we’re talking about they come home and the things that are said to them by friends and family. You know, these parents need even more supports because of that. So let’s say someone just got a diagnosis or just had a child with Down syndrome. And they have a GGS Playhouse near them. And they walk in what kind of things can GGS Playhouse offer them for supports?
20:24
Yes, well, congratulations. That’s the first thing you’re going to hear is congratulations when you walk in the door. And the vibe of Gigi is like she’s like walking into awesomeness. You know, you walk into energy, we always have music on, we never want that mom to walk into a cold, sterile environment, because you know what she’s walking in. And you know, she’s taken on a 24/7 lifetime diagnosis. So we want her she might not be ready to talk right when she walks in, she might need to take it in. So we really like to have that music on, we’d like to have a kind of a relaxed atmosphere where she doesn’t feel like now I have to share my soul. You know what I mean? I have to talk about that. Like, you know what, get the other kids situated. There’s always some, you know, we’re very family driven. So it’s all about the siblings too. There’s a ball pit, there’s a gym, there’s things to do everywhere in a playhouse. Everybody wants to be in a playoff. But then there’s also your learning lab where you’ll do your one on one tutoring and literacy and math or will your your speech therapy, your handwriting, we’ve got GG University, which is for career skills, we’ve got a Career Training Center, which is a store that has a storefront in it, where you can go get gelato or coffee. And these families can come in and get a vision of of what their life can be they they’re going to learn when they walk in the doors, from prenatal diagnosis, through career skills, we make a lifetime commitment to our families, and they will never be alone. And I think that’s such an important piece. Because like, the way people have described it, you know, what they’ve come in moms will say, You know what it’s, and mostly because of that lack of understanding that you guys were talking about, that I just I you know, I feel like I’ve been out on an island. I like I feel like I’ve had this baby and I’ve been like on this island. And now coming into GG, then it’s like a whole new world is opening up for me like that was, you know, that was my bridge to get in there. But they’re almost fearful to come in for the first time. You know, because you you are, it’s you’re getting outside of your bubble of I’m just going to protect and hold this baby, you know, and you’re going up. This is it. This is I’m accepting this diagnosis and what it’s going to be. And then they’re always like, why didn’t I come in the first day, and some do some comes straight from the hospital. Some come when they’re pregnant, some come later, some come out till they’re two years old, you know, and all different times in life. You know, they come in all different types. But whenever they do, we have programming for every single age group, every age group, a fitness program, whatever it is all different, like our GG fit is everything from infants because we know we have to build that core so that they can get the air out to be able to speak or do dependent energy keep it Glasgow’s infant toddler school age, teen, adult and even caretaker. So we hit every different part of the family. And the kids are there. You know, the siblings are there, they’re making lifelong friends. It’s really a magical place. So but without that, that’s the feeling you can’t get in there. And then you just, you know, you’re never going to be alone. And I’m trying right now to to capture that in our virtual Playhouse. So we have our virtual Playhouse now, that serving families all over the country, but also all over the world. And to capture that same feeling that same hug, that same energy that you get when you walk in a jeep. So we’re finding what we need to be doing that is also be be talking to people in their own language. We have a lot of Indian families, we have a lot of Spanish speaking families. I just got back from our to Mexico locations last week. And they’re amazing. They do more program hours at that location than any other Playhouse in the GTS network. Because those families have nothing. So they travel for three, four hours to get to their GPS. But then when they’re there, they get speech therapy, they get literacy tutoring, they do handwriting or you know, for the adults, they’re doing career skills, or they’re doing fitness, they’re doing Taekwondo or whatever it is that they’re doing. But they’re there for a longer amount of time. Because that amazing team at our Mexico location knows how far those families have come to get there. So they they get they give you when you walk in like a passport and on your passport or tell you where you’re going today. And you’re gonna go to literacy first and you’re gonna go here, and just making the most out of that time because they won’t get it if they don’t get it at GGC. And so we just opened a second location there in San Juan del Rio. So we got to see that and just the gratitude of the families and in a culture where you know, many cultures don’t accept disabilities downtown, specially and watching the communities now 10 years later since we opened embracing it watching the dads come out, because you know before it was As the moms would do with the watching now the celebration and the voice of the dads, so it’s really cool to watch. To watch what happens when you can change that cultural just shifted a little bit and bring that acceptance. And so that location will actually be hosting our Spanish speaking groups on our virtual Playhouse. So we hope to be able to through our virtual Playhouse get to those families who don’t have anything but still get that same vibe, that same energy, I want to use AI to kind of put it together to have like, you know, a bopping, Nancy and Gigi on the page when you walk on or something, something just really to keep that energy and violin to make sure that these families know that they’ll never be alone.
25:43
Just having literary training and handwriting and your math supports and tutoring. That sends the message that Yeah, your kids can they just need supports?
25:55
Absolutely. My typical kids needed help. But they all had tutors. That’s what I don’t understand. Like, why do we think our kids aren’t gonna be tutors, my typical kids needed tutors. And that’s okay. Do it. Take the time invest in your children. That’s it Americans of course, invest in her. The way she reads the way God reads now, the Witch and she’s still in the literacy program. I’m never taken out of that. I like it’s free. It’s every week somebody else? And she’s with a tutor? Why is that tutor there? Cuz she wants to teach and help people. Thank you, God. So GT gets to go in anybody who isn’t a tuner gets to go meet with somebody besides family or mom, or you know what I mean? Who, and, and impress them with her skills, you know, and it’s just, it’s awesome. I will take advantage of GGS programs is forever. And her reading gets better and better, or articulation and helps in her speech, it helps in everything that she does. I mean, she’s gonna be a lifelong learner. And I’m happy about that. Because I you know, with our kids, a lot of times, we know that repetition is everything. And it’s, it’s a lot easier when someone else is doing that work for you sometimes, and then you can just reinforce it at home.
27:11
Yeah, and like every kid, I mean, that a lot of times we are our typical teenage daughter doesn’t want to hear dad tell her again about certain things or mom tellers or certain things. I mean, how many times do we see one of our you know, Sophia will go out. And here’s something that we’ve told her for a while, but it connects when someone else tells her
27:29
100% 100%
27:32
You do know why there’s a separation, but there shouldn’t be a separation. And I think it would bring so much ease to parents, if society would stop telling us that there’s a separation because there’s not, not maybe, maybe Liam will achieve a goal a little bit later, maybe it takes a little longer, but maybe it doesn’t. Yeah, that’s the weight. When you talk about lifting, lifting, Gigi, when she was just a baby and feeling that weight, that’s like you felt the weight, I don’t think they much feel the weight. But you felt the weight, and it’s the weight that that weight that is that tells you that it should be different. But you know, that’s the thing is to change that message because you get here and you’re like, what it should be, it’s the same, it’s the same, it’s the same. And honestly, sometimes you can tell that to parents, new parents, and they look at you like you’re just saying that to be nice, but it is the same when you get there’s a certain place that you get to and you go, Oh my gosh, I’ve been putting so much energy into feeding that what was fed to me and getting that keeping that machine going. But it’s not, maybe it’s a little, it looks different. But aren’t we told that about every child, every child, it looks different, there’s no pattern for the same child ever. So if we could go back and just give that message, just keep going. And when you get someplace just like you do with your neurotypical child, be there then and then figure it out. Don’t just have them carry all these might happens their whole life.
29:06
And those might happens are are the weight that is on them? Because it’s It’s restricting them. It’s pushing them down. It’s it’s telling the schools that they’re not going to be capable of keeping them in that classroom or where they need to be I said, you know, and my kids too. We’re like, Mom, please don’t let her Don’t let her go to don’t let her go to Barrington high school, my high school, which is a very nice high school. Have a nice, you know, and he was like, they’re like the kids with special they’re never with the rest of the popular. They’re never with everybody else. We teach typical kids to stay away from our kids. Because we keep them away from our kids. We put them in other classrooms. They don’t start out that way. You know that they’re taught that Oh, don’t go around those kids like those are the kids. They’re separated over there because that’s where they belong somewhere else. Not near us. What the What is that? I mean that messaging yeah alone. implant. I remember when JH was a freshman and they weren’t, she was doing the tour of the high school I was with Bella who was a junior, we were just kind of hanging around watching her do the tour with it was freshman day. So it was, you know, also she was with the A through G. So all the kids that were freshmen is coming in. And I remember we’re kind of hanging hanging around in the back, just listening to what the tour was and what things were going to be like. And the kid who was given the tour was a good boy, he’s just, he’s a senior. So he gets to give the tour. He’s given the tour and he goes, Oh, and this is this is like this like, but social services like it’s where kids with special, you guys will never need this hallway. Don’t even don’t worry about this. Any capital on that was the tour where the kids with special needs. And literally I go, fellas, like, Please, mom, please, please my mom, please. Like, this is my school, like, please don’t. And again, that was just a kid. And that’s what the school taught him. And he doesn’t belong near that hallway, or near those kids who are in there, which is so disheartening and so sad. Because this was a good boy, you know, you’re not giving those tours unless you’re on a roll and doing great things. You know, like, he was a good kid. But he was taught that he didn’t belong with those kids. How sad is that? But what does
31:20
that do to him if or any child who has a learning difference? Who has any needs has that need because Special Education IEP is five oh fours are not just for the extra chromosomes. Actually, if you don’t have that diagnosis, it’s really hard. Just so you know, it’s really hard to get approved for a 504 or an IEP, you have to do all of those same assessments that they push on us, like a neurotypical person has to fight to get a diagnosis. So I see where that machine is like you, they send the message, you don’t want to be there. So if any kid has a need, they don’t ask for the help because of the stigma. It gets you to fold because, one, it’s creating a society who judges themselves who sees differences as just the worst thing ever, never accepting that we’re all different. And we also don’t get help we don’t get help for for we don’t get help from mental health. We don’t get help for any, any kind of difference. There’s just like, an n. So that child that that great kid, you don’t know. You don’t know what he needs. But he just knows. You don’t go down that hall. Yeah, but he may need to walk down that hall. Right. And you don’t know, you don’t know the gifts that are down that hall shame that’s put on it. Yeah, right. And then then you look at individuals with different needs and with different diagnosis. And it’s just a create, it’s just like this giant cesspool that it creates, no,
32:58
it does a create, and plus that kids never going to interact with an adult, a child with Down syndrome, in an educational setting, right, maybe in another way, but not in where you would put emphasis and focus, like education or the workforce, and then we understand why our kids aren’t getting hired for jobs are thought of as being, you know, in a workforce because this good kid’s going to maybe be an employer one day or a teacher. Yeah, we just need to change the entire thought process of how our society thinks about learning differences. It’s it’s
33:35
our differences, differences, differences, period, just period. So what did you do? Did you say anything?
33:43
I not to him. I mean, you know, what was? What was it going to be for him? And believe me, I’ve been saying it with the school, like, they see that kids should be separated. That’s just the way it is. That’s that’s where they’re, I mean, I’ve brought it up. I told them what had happened. They of course, apologized and said, Well, you know, we’ll make sure that when we teach the tour that we tell with it, you know, too late for that, because it’s not the tour. It’s him being in school the last three years in the school, and you keep everybody separate over there. So it’s not the tour. It was it was the way he’s been taught through your school to just separate and not have those kids and not be near those kids. And I try I’m done. I still try with the schools. It’s just it’s it’s like I don’t know how we’re going to make that change. We started at GGS we started generation G back in like 2014. generation G is a conscious decision to be better every single day. Be generous, be kind be accepting, simple to do you put a G in your hand with a hard on it posted on social media. It’s a simple thing. You take the pledge with your other children with your kids take the pledge and I accept you.org We tried to get families we tried to get schools together to do this. We have Gen G clubs in a lot of that high schools. My daughter Bella then started the Genji club at Barrington High School to try to bring all the kids together which helps a little bit But I thought, you know, it only helps the people that you can get to listen, you know what I mean? They all signed the pledge, which was great. So she did have a nice, they did have a nice base, I think the kids did a good job. But again, this is also the administration and what they’re showing those kids.
35:16
I think administration forgets that discrimination, especially against anybody because they have a disability is still discrimination. It’s discriminate, but it’s discrimination in a big way that you know what I mean, it’s like, and also, the law is FAPE. I mean, the civil right. And what happens is that the if you get an administration that’s on the same on on board with the same message, then they pretend that that other stuff, is the opinion, and theirs is the fact but in fact, their stance is opinion. And the other stuff is a civil right. So I’m just waiting, there will be a time when the schools are held accountable, because
35:55
you’re like, Oh, this is a good school, right? We came from the same place, but you can’t write every
35:59
site, you know what I mean? You you yourself cannot fight every fight, and you’re doing all of this stuff that’s great for the community. And then you go into this situation, but don’t you as a parent, go, I need to fight this fight, too. And then you feel a little bit of guilt, and then you feel like you failed in some way. But we that’s why as an entire community and society and allies, we need to start flipping the narrative. We need to have allies that take over. And like you do like if your friend is sick, and you’re healthy, you step in, and you though, let me make you a meal. Let me clean your house. Let me walk your dog. Well, we need allies to come in and go, Hey, you’re fighting? You’re doing this. You’re changing the narrative. Let me let me walk your dog. Right, let me let me make let me help you. And that that is what we need as allies to, to also be on board to, to change the message in their children. So when their children do that tour, they can go Excuse me, but that doesn’t seem right. Can I ask you was Gigi on that tour? When he said that
37:02
she was on that tour?
37:04
He obviously wasn’t paying attention to. He doesn’t.
37:07
She didn’t know that. That was her hallway. She didn’t know that that things were gonna be she thought she was gonna be in the whole school like everybody else, because that was the tour she was on. Right? She didn’t know if she was going to be one of the ones in that hallway.
37:17
But isn’t that an example? He doesn’t see Gigi as a different hallway? Yeah, he didn’t see it. He doesn’t even know what he’s talking about when he says like, he has absolutely no idea because there’s there’s G there’s GG, right, right.
37:31
If there was inclusion, probably starting in in elementary school for him. His his idea of when he would been on that tour, and the way he talked about that hallway would be completely different. There might not
37:41
be a hallway.
37:42
Yeah, that may not be a hallway, right?
37:44
It shouldn’t be a hallway. It should be
37:46
like, you guys, it’s I’m telling you. I’m really my son Franco, who’s who’s now ironically, he’s the one who drew when he was six years old. He drew the very first GGS Playhouse logo. And I know in that crazy, and we still use parts of it, we still use that. But he when he threw it there, it’s for kids holding hands like this. They’re emojis on their shirts, the first original logo. And now ironically, he works and does advocacy and marketing for us. And I’m telling you, that kid might be the one who could do what we’re talking about that generation I shouldn’t say him, but maybe that generation could be the one because he’s so gets it. And he watched it as a sibling. And just they were the ones that have a please don’t ever go to school. You know, just it wasn’t just there. It’s just it’s just the way it is here. You know, just it’s just the expectation it’s kind of the way things are so when I listen you guys shot I pray it’s gonna like he’s because he’s seeing it more now. And it’s infuriating, because now he’s working on the jobs for these adults. And I’m telling you, I don’t know that we have someone who believes in people with Down syndrome more than he does that kid is he’s been he started our store our Career Training Center when he was 14 he was training these guys to do amazing that you know, he’s, he is all in and and now seeing where our world is at like, I would Diversity, Equity and Inclusion doesn’t mean disability is really frustrated. When things happen to our kids. No media, no nothing but it happens to a race. It happens to transgender it happens to you know, a cultural, different cultural makeup. It’s everywhere. And then it’s a hate crime. But it happens people with disabilities things terrible things are happening to our kids, you guys I don’t always put it out there because it comes to me unfortunately. And sometimes I want to know sometimes I don’t. But most recently, I don’t hear about the girl through the through bleach in her eyes, bleaching her eyes when she was walking her dogs 20 years old. No, I did hear that and beat her up and then said, you know, if you tell anything, you know, if you tell your mom I’m gonna beat you up more, you know, like, there’s gonna be repercussions. So she didn’t say anything. And the next morning when she woke up she went right to bed and she couldn’t open her eyes. Well Obviously, so that mom instantly took her to the doctor. And the doctor is like, Wait, what happened here? She said, I don’t know, I think it’s conjunctivitis, you know, she’s got pink. It’s a really bad case of pink and the doctor goes to leave the room. These are chemical burns. I don’t even know what happened to this girl. And once the girl is alone, she told them how, you know, the lady threw the bleach in her eyes, and she had bruising on her neck. And whereas other things that happen, so of course, the doctor called the police. There wasn’t an arrest, there wasn’t a news story they called the local news. Can you imagine? That’s not a hate crime? Because this girl was her diagnosis on her feet. She’s a victim. And we’re doing nothing about this. Like no, not okay. And it’s not a story. If that was any other marginalized group. There would have been held to pay.
40:47
Yeah, we talked about that in education, too. You know, when you know, it’s like,
40:52
this is, yeah, but this is what I think you said it. If it was another marginalized group, they use social media. We are the voice of our children. Yes. And we exactly have already been fed one, we’ve been fed so much fear, to when someone threatens our child, we actually buy into that threat. But we propagate the threat and enable it by not putting those people as accountable. And that’s one of the things that I’m Why are we so polite? Why, why do we I believe I believe in peace, I believe in kindness and empathy and compassion. And we can do that gently. But we can also be fierce, we don’t have to, it doesn’t have to be a choice. We can continue to be good humans and make people accountable. Make our son was denied a civil right to an education, told like he didn’t receive an education at a very nice school. Like we’re not we’re just not going to uphold Vapeur idea. We’re just not going to do it.
41:59
No consequences. None,
42:00
not from the district. Nothing. But we imagine
42:03
you did that to any other marginalized group. Just even try it.
42:07
Try it yet. But we, we honestly, we had been work, we were tired, we were exhausted. And we and then we go, we have to make a choice in that one moment. We either put all our energy into this negative horrible stuff, or continue to put our energy into our child who still needs it. Like our child still needed the support, we needed to find a different placement we needed to make sure he was receiving his education every day. So we sat with him. We didn’t have additional time to fight fight. That’s where allies come in. Also, jump on social media. I mean, you’re gonna have some what are those people that say bad things, you’re gonna have some of those people follow you. By trolls. You’re gonna have some trolls, but they belong under a bridge. We’ve read Rumpelstiltskin, but you’re gonna also have a lot of people who go, oh, that’s wrong. And and this is the generation this is the generational change will stand up.
43:03
And I think if you look, we have I, like I’m that I accept you.org page. I do share stories of the of the bad stuff for people who choose to watch it. You know what I mean? I do say it in my newsletters. And sometimes, you know, the hard part for me is it’s for those new parents, that you don’t want them traumatized. But then again, you know what I mean, the word has to get out. There’s like this fine line of do tell because they are also the army that can stop this. But then again, I want to protect them from it. But you know what, it’s out there. It’s It’s unfortunately, the way the world is. So I accept your order page. We do have for people who choose to want to know what’s happening. We’re putting some of the stories up that happen.
43:46
Well, that’s where you know, allies need allies
43:48
that needs to be on Instagram that needs to be on Facebook, that needs to be everywhere. So people
43:54
margin marginalized group being harassed. I mean, I’ll stand up and man, I got 10 people behind me going, Yeah, that’s not right. And you get more of this, Oh, that’s too bad or something or I’m not gonna get involved or but,
44:07
but it’s scary. It’s I won’t deny it’s scary. And honestly, I think about any time that I have told anyone about Liam’s denial of an education, like why did you change schools, your carpenter is such a great school. Well, they denied him his education. They violated his civil right to an education, they denied him his support, they didn’t uphold his IEP, they are astounded.
44:31
They’re astounded but they but there’s not a lot of activity to fight like, you also had this idea of like, my kids going to school, I had this idea of how great of a school it is. I’m not really gonna, like be aggressive about changing something because if I feel like the school is so great, right, it’s so great. But think about any
44:48
fight any fight that has changed anything, women’s rights, right, anything that has had it we need to be persistent and telling the stories like we Yeah, like we need to be honest. Like, we don’t need to be covering up. Yeah, okay, maybe we don’t need to just be like, I know sometimes I feel like I’m just like, I can walk down Ventura, and pass carpenter street where the school is and be like, they are horrible violators of a civil right. But then part of me goes, why not? Laurie? Why not? Why not? When, when people ask me, Did your kid go to carpenter? Why not, instead of going well, they’re great for neurotypical, they’re not great for neurotypicals because they propagate segregation. That’s what they do. And you call it you call it what it is, and allow, allow others to come to the same conclusion, allow others to be empowered by knowledge. And I really do believe if we, we start to uncover and stop covering up for the injustice, like someone threw bleach in my daughter’s eyes. This is the video I have. This is the threat they gave. If anything else, I’ve gone to the police, but they won’t help me. Now it’s a liability on the police department. Let them be let you speak and speak now. And keep speaking until the people go, whoa, whoa, whoa, because nobody wants to look bad. Nobody wants to look bad. And they will start to make changes because they have to make changes. Do you know what I mean?
46:16
We have to make it a hate crime. I’m telling you, like I said to me, if that was cultural, that was race, if that was gender, that would have been a hate crime.
46:27
By definition, it’s a hate crime. And and that it just, they’re pretending that it’s not a hate crime. Yes,
46:33
I could I call this these, this mom, who’s now so afraid to state well, just that they’re going to take her kid that she’s like, it’s okay. It’s okay, I go. I have lawyers, I have people we can do this. But somebody we got to stand up and take this stand and let people see it won’t be tolerated. And that it would be a hate crime. It is a hate crime.
46:52
It is by definition, a hate crime. They’re just trying to make you believe that it’s just just like when you sat in your IEP, it is vaping idea. They’re just trying to make you pretend that it’s not. And I’m telling you, it’s just social media, we need to jump on. Like, we just need to jump out we have these tools at hand that bring attention and you said it the mom is afraid. These parents, us we have been we have been fed fear every step of the way. We I had I had a regional center officer one time, make me think that because what they in order to deny a service they were denying? Well, if you say that they’ll take your child, and I was like, I like you can’t just first of all, do you know how much how hard it is to take a child? Do you know what you have to prove and these people that are so filled with hate are in the wrong positions, they shouldn’t be teachers, they shouldn’t be administrators, they shouldn’t be in places of power. And and you’re right, you get canceled, you lose your job. If you say something racist, you lose your job if you go against any marginalized group and they need to begin to lose their jobs and be held accountable for the same the same violations of any individual who has any disability. Because it is although not in society. By law, it does hold the same way by law that’s just how it is. But geez Playhouse transition, we go well you because you are you are
48:27
very passionate, very passionate. Totally
48:29
know I’m so glad to know you guys, I can’t wait to tell Franco that that you know, wherever we can get more ammunition and talk to more people with Mark that, that believe this in exactly the way that you do that that’s getting all those powerhouses together. And that’s how we create that change. You know, like because like for us we are so focused on I mean, we serve over 30,000 families directly with free programs. So whether it’s whatever it is, so it’s always like we’re in that day to day grind of the best programs and giving people what they need and Bubba but this is another avenue to that because when we our mission is to change the way the world sees downs and send a global message of acceptance for all and that’s all of that other part you know the programming is one piece but this other this other piece is huge and something I so so believe in Am I like I can’t tell you how many times I’m like I’m going to end up in jail because I got the like and I will and I can’t wait because then good don’t put me in jail and maybe you will listen I’m like is it going to be me and Gigi doing a food strike him I gotta go sit on someone’s you know like when Netflix said like there was so many things so many times that these fights going How is this a fight? Why is there not more people outraged like I’m not understanding this at all. But I said it’s gonna take me going to jail and I will I could care less like like, what my big mouth doing something telling the wrong person off at the wrong time or but there’s got to be something to give these guys a voice and you’re so right. Because I was sitting there in In June, and there was this, I’m in Chicago and there was a big huge parade. I’m like, am I mean, it was awesome. The parade was it was the disc, or it was the disability, right? It was the prior LGBTQ Pride Parade. I’m like, how do they get to close down? The whole city? You know, we were all like, I’m like, How can I do this for disability? I got like, all excited looking at it. I’m like, You know what? It’s because like you said, that population of people is in corporate America speaking for themselves. They’re in the workforce, asking their bosses to do these things. Now are people with disabilities are not there, we’re just out there trying to be their voice. So that’s why we don’t have the strength to have that big huge parade. I want that prayed so bad, then I’m like, well, it’s Disability Pride month, next month, you know, in July, I’m like, maybe we can do it. You know, I want to shut down Chicago, or pray for Down syndrome, or for disabilities, I want the whole city to celebrate with me.
50:59
I’m going to tell you, the difference is look at the history of LGBTQ and what they gave, look at how their children were killed, how they were assassinated, for fighting for fighting, who they for being able to be who they are. Right, and
51:17
they get, and they get to be that voice?
51:20
Yeah, how do we teach adults with Down syndrome to be self advocates?
51:24
Well, I Well, first of all, to be self advocates that, you know, our children need to be seen as equal by their families. That means when your doctor comes in and tells you some garbage, say, thank you very much, is there somebody else I can talk to, because I don’t like your opinion, or you that’s very nice for you, you’re wrong, you can leave now. And you can say that, they just have a degree, it’s a practice, it’s not a perfect, say it that nobody, they don’t hold any power over you. So start speaking, because they wouldn’t say that to the mother of a neurotypical child. And then, like, Stop, like, we need to stop that message of fear being just fed and propagated in the schools in society. But the thing is, is every marginalized group has had to fight. They’ve had to fight really, really hard. And they’ve they’ve gone up against all of those things. They’ve had to maybe they, by biology, have a voice. Maybe they don’t, you know, they didn’t haven’t had to, like, get their get their voice and have speech therapy for their voice. But they’ve but their voice has been silenced. Women have been silenced. marginalized group, different races, different, like LGBTQ everybody. Like it’s just you follow that. And you look, you say you’re going to end up in jail sometime in this fight. And if you do you look, a lot of great people have been arrested fighting for what’s right. We’re out here at Warner Brothers. And they’re striking, right? And we’re striking, we’re striking because we’re finally using our voice and like Bryan Cranston said we won’t let they won’t, we won’t will no longer let Them take our dignity. And that is really something that this community can actually say to because they’re taking our community’s dignity by telling us that we’re not equal. But but the you know, they put out a little sign that said, hey, it’s violation of a sound ordinance. noise ordinance. Don’t honk your horn. You know, how many people responded from fear and didn’t honk? I bet a lot of people did, because it’s fear. So what happens is when you start to fight for what you want to fight for, other people are going to try to make you fear and and think a different way.
53:40
And I feel like our marginalized like ironically, individuals with disabilities fall across all marginalized groups. And I feel like our marginalized groups help, like are probably like, they’re the ones because they’ve been a victim too. Yeah. So they help GGS you know what I mean, the LGBTQ like, they are huge supporters of ours and great friends of ours, a lot of our families, you know, they’re, we fall across every group. So I feel like the individual marginalized groups are love us, and we love them. But it’s the other people that don’t live all of us, you know what I mean?
54:14
Well, and it takes that group of people that aren’t affiliated with with that, that marginalized group, like, you know, the women’s you read the women’s movement, it took a lot of men to be allies with the women for change actually happen. For the civil rights group. It took a lot of people that weren’t black to ally to make a movement. We need people that aren’t affiliated with, quote, unquote, our community. I mean, we’re all community, right? But we just need the support of everyone and that’s what’s really going to make a change,
54:46
but we need to support we also need to support everyone and you said that like we’re across every marginalized group we are, but this is what I thought of is, hasn’t having GG made you a better human. Don’t you walk, don’t you walk down the street. And if any marginalized group, even if it’s not a group, if any human, like I’m in the grocery store, if someone is rude to someone else, or just like is using this invisible power to make someone small, I will stand up for that you become an advocate for all you become an advocate for every human, everybody, every single human. And that is what they don’t tell you that. They don’t tell you what to do. When you receive the diagnosis. You are going to become a firebomb of a human. I don’t know what humanity path you’ve been on right now. But that is about to change. And if you want to find out what your purpose is, it’s, it’s about to become just so beyond because like, I’m I might have been kind, I might have been compassionate and empathetic. But I now I understand. I understand what it means to have the the unthink like a civil right denied. That is unthinkable to a lot of people. And because I know it’s real, I stand up for everyone. I stand up for everyone because people will go well, that’s probably not what it is. No, it is what it is because it does happen. But hasn’t hasn’t GG just made you this person who commit your life to changing the path for other people 100% You’re making a change, and you probably wouldn’t have done it if you wouldn’t have had GG. Now
56:28
because you can’t do it in that same place like you were talking about. Like if you weren’t Liam’s mom, you wouldn’t be able to do it in the same way. And as passionately. No, wait. I think God every day I’m trying to think this point. I’m like, I said thank you to God for something. I don’t even know what it was. And I was like, because she makes me see things the right way. She makes me see life in a different way makes me a protector. Like you said like anybody like I’m in for the fight. Are you kidding me right now? Like, like you said, you see someone at the store, you’re like, I’m instantly end doesn’t matter where it is what’s happening? Mm
57:07
hmm. Well, do you mind if I move on just changed a little bit and just ask you it was a question I would ask what’s the future of GGS we’ve heard so much about the programs for up to three and then you know, middle life and adult life. What’s what’s GGS future look like the GG is Playhouse
57:26
GG spouse? Yes, I would say I really think our way forward that’s really going to help is our virtual the virtual Playhouse and being an interactive, safe place, whether it’s for inner cities, Rural or other countries, I really think that that’s that’s where I’m going to be doing a lot of focusing on I you know, we, I know how to scale in the US, I know how to help in the US. And again, we never push into a market. We all people come to us, they want to do these things. And that’s how GG spy house is born. And then we give them the model and help them do it. But I do think helping in areas that, again, we’re talking about these marginalized groups, there’s many marginalized groups that haven’t been given what other people have, because today’s past used to be a place only. And now that it will be a virtual space, it will be there for everybody where everybody can get served. And like I said, in Mexico, they drive for hours to have to get to a playoff, we want to be able to serve them with that same magical experience through our interactive virtual playoffs. So I think a big focus of it will be on future of of where tech can take us where AI can take us. And I do think there’s still a need in in areas to have that home base. I would love for the play houses, you know, the virtual playoffs to be serving people worldwide, but they still everybody would still have that home based it’s still be able to provide play houses all over the country and all over the world where people can feel safe and grow and learn and share those positive experiences and the high expectations. You know, so many times like, like you were talking about, like when they tell you know when when people say you’re going to you know, be nothing you can make yourself be nothing. You know, when people say someone told Gigi the other day, they were you know, she works out all the time. And and they were like Gigi, you know what, it’s time for you to start running. You got to do a 5k like you can run. You can run miles like you can be running and she goes she goes oh, I can’t do that. And her trainer goes well, can’t isn’t in your vocabulary. Then she goes well, then I won’t do it. She is she has no she doesn’t want to she’s not a runner. And that’s not her thing. But putting those high expectations. I love that she was like, Okay, well then I just won’t. Okay, is that how’s that? I don’t want to run. I’m not a runner. And I get that so I know where she was coming from. But I think putting the DVDs puts a high expectation and the sky’s the limit. And to those families that were told their kids were going to be less than that are, you know, they put our kids on that separate chart? I’m like, Don’t you dare put me on a Down Syndrome chart, like, where she is she healthy, I don’t need to know that where her weight falls against someone else. I mean, to me, developmental milestones, all that stuff is, you know, with Gigi is we do not work on developmental milestones. Our metrics are all based on purposeful progressions. You started here, we need to get here, whether it’s reading one more word, doing one more set up, whatever it is, just to a little better than you did the day before. That’s all we ask. That’s what JJ says. That’s what every day you grow, and every day, you’re celebrated. So I would just still love even though the virtual playoff is a very big focus. And there’s a lot of need in other places, I think that we still need that help for them to be able to get there. So I’ve got a lot of work to do you guys.
1:00:51
That kind of answers that. That question I kind of posed the beginning of that listener that lives in Alabama that was looking for supports, you know, at least that virtual aspect of GGS Playhouse could could maybe bridge a gap there.
1:01:06
And there’s also the possibility of reaching out and working to open your own gym and Alabama, right. That’s how you make the you know, if that’s if that’s a possibility, that’s all of that, well, we’ll leave the links on the show notes.
1:01:19
And people are usually surprised when they when they do it. Because they’ll usually find out. There’s more people in your area that are looking to do the same thing. And we start connecting those people. And most of them are connectors themselves by even by just even doing the outreach. And that’s when like a team begins to form because a lot of times there’s places that that warrant a brick and mortar that that they should have done, but they don’t have the right leader in place, or they don’t you know that they don’t have like a diverse board or they don’t have the right you know, so it’s a matter of just building that. So Birmingham, they might even be in a good place right now that they’re they couldn’t be starting. And we don’t even know. And I’m not even I don’t know. But we’ve got a growth team that handles all that. But they could just even if they just hook them up with other like minded people, that’s great, whether they find something there or they start something on their own. It’s just a matter of that they’re that they’re able to feel that connection with with someone and know that they’re not alone. I think that’s always the most important thing.
1:02:20
I just want that to sit there for a minute so that people can hear that. And connection really matters. So everything is possible. Right? Everything is possible. Just like Gigi said, Well, I just don’t. I just don’t want to. And that’s okay, too. Yeah, I love I love one her trainer for who said you can that because that’s who we need. And those are the people we need in our kid’s life. And those are the only people we let in our lives as well. Right? Because then you start to look around and go who what toxic stuff is, am I allowing? Yeah, I have to know. Did she go to that high school? She did. And how’d that go?
1:02:57
Well, they went okay. The thing is, with the high school, it’s the teachers are awesome. It’s the administration, the teachers hands are tied. They know it, and their hands are tied. So they did great work with her. So thank you, God for that. Like I’m grateful for what those teachers did. Even though they were bound and tied by what the administration was doing. She still had really good people cared about her who loved her. They they couldn’t change what the school didn’t want to do. I you know, they weren’t going to put her in a science class, even though, like when she started middle school, this this the district I’m in, and it’s a beautiful district. I live in a nice district. But she started middle school. So she was and she was the first one in second grade. She knew all of her state capitals. She knew all of the planet. You know, she always she was she was a learner. And she’s a visual learner. And I always ask them to teach her the way she learns. And she will learn. And we do these educators symposiums to help our teachers learn the way kids learn, and they will be successful. It’s awesome. And so anyway, we go to get into middle school, and I go to the IEP meeting and and the guy goes, so yeah, well, we’ll have her in, in in her life skills. I’m like, Ah, going into sixth grade. I go. I go, Oh, well, I see my principal go, Oh, God, he just put his hand down because he knew I was about to blow I go. Oh, skills. I don’t remember that for my other children. What? What does that look like? And they go, Oh, that’s what should be like I’m emptying the recycling bins and washing windows. I swear to god, you guys. That’s what they said. I go. When did she show you? She’s not capable of learning academics. What do you do it I don’t understand what’s happening. This is just well, this is how we do it. I’m like, Oh my gosh. I said well, she will not be washing anyone’s windows but mine. And not taking any recycling bin out. Are you out of your mind. But that is how they treat the kids with special needs. Sixth grade 11 When did she show you she stopped learning? Terrible, I still get, I get that many schools do that life skills in sixth grade,
1:05:11
it makes my head want to like explode, because and
1:05:13
it doesn’t it’s still happening. But here I want parents who’ve been offered life skills in sixth grade to know that the burden on the not education of your child, the non education of your child, the burden lays on the school. And it isn’t your child can’t learn. So we’re going to have her take out the recycling. You know what? Give your janitor more hours because they need them. Okay? Yes, it’s not, we can’t. So this we’re not going to it is? Well, if you can’t, one, they need to find a way unless you sign off on it, which they will trick you into doing. If you’re not aware of this. They must either pay someone to educate your child or figure out how to do it. If they can’t figure it out. And parents please do this in your IEPs this is what we’re going to do. Okay, well, how are you going to sub This is my evidence shows she’s still learning. So how are you going to you don’t think she can learn science? Well, how do you propose that you’re going to teach her science, you tell me what support you’re going to implement? You tell me what you are going to do, too. Because the responsibility is not on the parent. It’s on the educator, please know it’s your civil right to an education. If they refuse, they can pay? Well, they had
1:06:23
to because I wouldn’t let her do functional field trips. I go, she doesn’t need to go out every week and go eat and keep her at school. And they were like, well, everyone’s I said, I don’t care.
1:06:33
I don’t care what everyone’s doing. I care about my daughter, you deal with those, I have to
1:06:37
laugh about how confident they were about GG skill or GG skills of recycling or taking out the trash or washing windows. It’s like you have my mentalities that that people have is like, well, they can do this. It’s like that whole idea of like, early on in our journey. We were told, Oh, maybe Liam will grow up and, and and bag groceries one day or some it’s like this. These are stock shelves, or whatever it was. It’s like, first of all completely legitimate jobs. But work for those jobs. Why have you boxed him into this is the place he’s gonna be? It’s just so odd.
1:07:10
Yeah, it’s, it’s imperii ating. And that they also do a coffee cart. So on Fridays, Friday mornings, you take the teachers coffee, and so this is gross. I am not even I wish I could make it up. I wish I could make it up. I’m not making it up. Not making it up. She wasn’t allowed to do that either.
1:07:28
No Good job. When
1:07:29
I found out about it. I didn’t even know about it. I found out about it from set. So she was talking about the algo. What are you talking about what coffee car?
1:07:36
My child is not giving any teacher who doesn’t see their educate their right to an education is equal. My child will not be serving them coffee, no way. No.
1:07:45
Those things happen when you don’t even know like I found out on accident.
1:07:49
Yeah, they do that. So parents need to be active in like, you can ask in your IEP is that you want a weekly update. These are things you can participate. It is actually at the end of the IEP form. It asks you questions on the questionnaire. Do you feel like you’re an active part? It is your right, look it up on your district website? Which can I make one correction to something you said? You said, I live in a nice district. They’re not very nice. We say that too. We used to say that we live with there’s certain things that are about that district. But as far as any district that does not educate every child, every child. I guess every marginal shouldn’t
1:08:29
have to be in quotes because it’s like, Hey, you live in an upper middle class, neighborhood type of thing, a nice funded school, but we can see how these
1:08:37
the funding does not go to our students. Yeah, yeah, the funding does not go where it first of all, where it’s supposed to go, it’s supposed to
1:08:45
go, there’s actually funding, it doesn’t go where it’s supposed to go because they get a lot of money.
1:08:50
And you know what, eventually, and I say it so many times on our podcasts, eventually someone’s going to have a lawyer and schools are going to start to be sued for embezzlement. Because if you take the money on, and our school art carpenter community charter took the money to educate our son took the money for his supports. There was one entire year where he did not receive His resource months ago. So that is stealing. And eventually, someone’s going to have some free time. And they’re going to start suing districts who embezzle from the government. And I, I want to say that part of my journey, because of all the negativity, I threw a lot of the baby out with the bathwater, like that list that were given. I want parents to be able to look at it as a tool. You saw your district for what it is. You didn’t really have a choice. And so you kept the baby with the bathwater. And I think that is what I would change on my journey and you know, parents, sometimes you’re in a situation and you can be the biggest advocate but you’re in the situation where you are, right, and you can’t make something into what it’s not. But you can change it from within. Or you can change your journey. Like, if you have a school district that doesn’t believe in inclusion, just be where you are. But no, you still have power in your child’s life, you still have the power to, you can tell your kids, hey, this is a segregated school. And this is wrong what they do, but you know what you have some great teachers who believe in you, or if their teachers don’t believe in them, you say, I believe in you. And the most important thing is for you to believe in you. And it’s not what I think you can do. But it’s what you know, you can do, and you prove yourself wrong, when you don’t think you can do it, because I guarantee you can do more than you think you can. And if that’s the message that we send our kids, they’re honestly going to be out of school, and then they have, they have their life ahead of them. And you just let them know that and you be that message. And that’s one thing, because I think that this journey carries a lot of guilt, and it carries that weight. And we don’t, we don’t have to, we don’t have to carry, we don’t have to, we see what’s in front of us. We know it needs to change, and then we change it in the way that we can. And if we’re all doing it, then we’re gonna see the change. Right. And that’s just I just wanted to say I just wanted to say that because I know that there was a there was a lot of guilt. When we left Liam school, we felt like we had failed, we felt like we failed. We just we didn’t we didn’t change the darn thing with that school. But it’s changing because you know what your son and all of his friends that know your daughter and all of your community are going to go out there and some of them are going to lead districts, some of them are going to be in politics. You know, they’re going to be throughout the world. And that’s where we fight for inclusion. And that’s how the world changes. Yeah, it’s how the world changes. And it’s changing. GGS playhouses changing it. That’s right. I’m so happy that you’re here when I was reading on your bio and, and your mission and everything I was like, yes. Because we don’t talk about that. We don’t talk about that. You know what, you know what, Brother, you know what best friend that really hurt my heart because my child’s able, my child’s able, you know, and if that’s not how you see them, that’s you, but don’t put that on me. And I find what I love about this journey is that the new parents don’t get it diagnosis is how one how outstanding our kids are, but how they change the their immediate. And then in just so many ways the world, they do change it in just a beautiful way that the world needs to be changed. And just, I look at your story, I see so many parents who have, you know, opened shops, created businesses, written songs, done all of these things that they would have never done with their life, they would have never done with their life without that extra chromosome.
1:12:55
And the siblings to I said make it when people are like, Oh, my 100 Kids, I’m like, How could not have made my kids who they are today. They are who they are because of their sister. Yeah, and what she has taught all of us. And thank you God for that. Because it’s it’s different. It is different. And and their friends, you know, their friends who have have grown up with her with, you know, as our crazy, you know, for teenagers all at once, like the house was just a madhouse all the time. And then, you know, be growing up with Gigi. I mean, she’s changed many lives just within our own family. That ripple effect of where that goes, is just my hope of where our future is gonna go.
1:13:36
You said when you got the diagnosis, you were like, What have I done? Have I willed this? And totally, and that but it was more of like a What have I done? I think now you can look back and go, What did I do? Like, what have I done that created this in my life, just so people know, when you get a diagnosis, it’s a naturally occurring chromosomal arrangement. We’ve just been made to believe it something else. But the thing is, is that it is also an amazing gift that the world finds out one family at a time. What an amazing gift it is.
1:14:10
Well, I’m glad you guys are out there spreading it, too. I love it. It’s awesome. I’m so glad I got to meet you.
1:14:15
You’re amazing. We’re so grateful to have you today. And thank you for all your advocacy and we’d love to talk to you again. Thanks so much for coming on.
1:14:24
Yes. Well, you guys were amazing. And I have to tell you, I learned a lot in this session. And I really, I want I can’t wait for my son to hear this. As I think, Laura, you were so passionate about everything that you were talking about. And I love it. I think it’s amazing. And I think we need to do more So together we’re gonna conquer it all you guys, we got this.
1:14:45
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If We Knew Then - A Down Syndrome Advocacy Podcast 