Transcript
Hello and welcome to the If We Knew Then podcast. I’m Stephen Saux.
0:33
I’m Lori Saux. Today we’re joined by Ben Hughes, to discuss the Down Syndrome Diagnosis Network, and their “Rockin Retreats”. Ben is the father of Ellie his seven year old who has Down Syndrome and a new diagnosis of Crohn’s. And so the first part of this conversation is catching up and connecting with Ben about his story and where he is with education. And what is really apparent as a parent is that need for connection and that need to share our stories, which is at the foundation of the Down Syndrome, diagnosis networks, rockin retreats. They are separate retreats for moms and dads at different times of the year to just take that break and connect and relax and fill your bucket, make new friendships, and maybe share some information about your journey with Down syndrome. But the great thing is that freedom to just belong and make those connections and have the respite necessary, but not always utilized on the journey for every parent and caregiver.
1:58
So welcome, Ben Hughes.
2:02
Hello, Ben. Hey, how are ya? Good.
2:05
So good to see you again.
2:06
Did you get a haircut?
2:09
Um, it’s a little bit shorter.
2:11
From a year ago.
2:12
For Halloween. I was Daddy Warbucks and my daughter was Annie. So in order to do that, I had to completely shaved my head. And I shaved down to like my, like big my head and a mustache.
2:27
Wow!
2:27
Wow. That’s a good dad.
2:29
That’s dedication. You just didn’t do like a bald cap or some?
2:32
Yeah, go big or go home.
2:34
That’s right. So good to see you again. We had such a great conversation with you, I guess. Where like, almost a year ago, I think when we talked to you last it was right around when the rockin retreats were happening. And I’m so glad to get back in touch with us to talk about the downside of diagnosis networks. retreats that are coming up. Yeah,
2:58
but can we do a catch up and see Yeah, you’re doing I mean, we know now your Halloween costume was Annie. Yeah. How is How old is your daughter? How is she doing?
3:08
Yeah, so Ellie is seven. She turns eight here in June. So she’s, she’s doing well. We’ve had some, I guess we’ll call them developments. But so she’s, she’s got some additional Gi Gi issues. She has an official Crohn’s diagnosis now. So she recently started a infusions for those which has been challenging. But um, but besides that, she’s doing great. She’s in kindergarten, she loves school. We’re dealing with some school things as all parents do. But for the most part she’s doing she’s doing really, really well. Keeping us on our toes.
3:46
I remember you talking about GI issues last year, what got you into down the avenue of finally getting some kind of diagnosis, you obviously didn’t know exactly what it was
3:56
why did they why did they decide to test for Crohn’s? What was that process like?
4:00
So she was diagnosed with her Crohn’s disease at birth. Right. So her spring disease is a colon issue. Basically, she has a hard time going to the bathroom. And then she’s kind of always had struggles with control struggles with you know, like waking up in the middle of the night having episodes where she’s throwing up kind of feeling like she would start shaking just would have a really hard time and then would have a big bowel movement. And we’d feel much better. So we started seeing a GI specialist probably two and a half years ago or so and it was kind of always going down that road of perhaps she has Crohn’s he didn’t think she did because he jinxed us by saying out loud, you know the likelihood of her having another chronic condition is very, very small. So we did upper scope colonoscopy, we’ve had a couple of those just to start to try to weed out what it might be Yeah, there’s always a suspicion of Crohn’s, she’s had a lot of a lot of bleeding ulcers in her stomach and upper intestine, but then her lower intestine looked fine. So where the Crohn’s was was more, up top, I guess is the best way to put it. And he, we were doing a beat ethmoid slurry daily at night that basically coats the inside of her stomach and, and intestines to try to help to heal some of those things in the effort to see if that would help with her Crohn’s. Turns out it was not. And so now we’re going this route of the more intense infusion with Remicade and, and just kind of seeing what that does. So that’s new as of January of this year. So we’re still still very early and figuring out what that what that all means. But one of the other side effects that were noticing was she was starting to have a lot of behavioral issues at school, becoming very aggressive. And it was it was just so out of character for her. Because she’s typically a very gentle loving, so I mean, she can be very opinionated and stubborn, for sure. But the aggressiveness was something that was different and that we hadn’t seen at the school hadn’t seen so we kind of went through that. And then it just the GI doctor was like, Yep, I guess it is Crohn’s. Like, he was so pretty, he was surprised we were kind of like, oh, that’s, that’s, that’s la that’s what is Crohn’s. So Crohn’s is an inflammatory bowel disease. Basically, a lot of discomfort, a lot of challenges with being regular and keeping down food, I guess, or like not digesting the food as much. So there’s a lot of absorption issues with her where she’ll she’ll eat but she doesn’t absorb all the nutrients and things like that because of the Crohn’s. So it can manifest in a lot of different ways. But that’s that’s primarily how it’s manifesting for her is just like these ulcers and the difficulty with having bowel movements, things like that, how frequently they’re happening. Issues with control. Just we deal with a lot of poop, we’ll put it that way.
7:13
It was there something like specifically challenging about the the test to rule out Crohn’s that made them not want to test for Crohn’s.
7:23
I don’t know that the test is necessarily challenging other than she would have to have a colonoscopy and endoscopy, right just to confirm because she, she’s nonverbal, so she can’t vocalize what she’s feeling. So we have to do a lot of guessing as far as what the actual ailments might be. Right? Like, she’s very, very tough. So we don’t know that she’s not feeling well until she’s really not feeling well. And then she’s, you know, we, we joke lovingly, right? Like with her, it’s just feeling fine. And then all of a sudden, we’re in the hospital, right? It’s like, oh, there we go. And it’s gone too far. And she, she’s not been feeling well the whole time. But she’s just been able to overcome it and deal with it. So I think the challenge of it was just that it was so invasive, every time we’d have to put her we’d have to sedate her have the scopes. I think in 2023, we had at least two colonoscopy is in Alaska PS, and then one and 22 When we were initially starting to have those, so that’ll probably be a regular occurrence for her. We will probably have a scope annually, just to see where she’s at.
8:40
Well, you talked about school, and I was wondering if what supports you again at school? Because, you know, there’s hours in the day you’re not there and she may need additional support with food and clean the restroom. Yeah.
8:57
Well, she’s still in diapers. So she she is not, she’s not potty trained. So she has to have a diaper change at school. So she gets a report from the nurse there to help change her diaper and all that. She has an aide at school that works with her. We’ve tried to be as nice as I can about the school this year because we’ve had a little bit of challenges this year compared to last year, but they will send back a communication log daily, just kind of letting us know how what her temperament was if she was misbehaving, what her what her diapers looked like, etcetera, just to try to make sure that we have good visibility into how the day went. Which is challenging to say the least when they we get a lot of calls from them asking if this is normal, or has she had something changed? What have you she’s the first child with Down syndrome at this elementary school. Prior to of her being at the elementary school, our school systems relatively big. So they had like a central school that was still inclusion, or an elementary school that was still focused on inclusion. But that’s typically where all the children with special needs went. And so they’ve tried to broaden the horizons there, which has been challenging for us and them, but we’re, we’re making progress, which is the important part.
10:28
Ben, I love you. And I think it’s so I think when when you’re like, I’m trying to be nice about the school because there’s challenges I remember, I think, when Liam was around that age, that that was part of our conversation, I think when we finally got to the fifth grade, the question was, why do we protect these institutions that aren’t doing what they’re supposed to do? So total spectrum
10:50
from where you are to that transition is documented by this podcast, too.
10:56
But I just I feel like that’s a really great conversation, because I feel I can hear in your voice, like an editor, I can, I can hear that you’re what does that call when they do it to music, where it’s like, you’re, you’re, you’re making it, okay, you’re trying to make it okay. And I feel like that’s the voice that, I know that when we were very early on with the school, that’s the voice we had to even talk in, in order to because we felt like if, oh, we don’t want to be a squeaky wheel, we want people to like us, we don’t want to say anything. And one thing I learned from, you know, kindergarten, first grade to fifth grade with the ultimate denial of Liam’s civil right to an education was that the best thing that I could have done was one always document everything, but I don’t I don’t have to protect people who are doing the wrong thing. And even if it’s just like, in my circle, like, I mean, I think you find your way through it. But you know, I think it’s very, I think they’re it does something to us as parents to be having things done to our children that we know are wrong, or having a fight, and you look next door and that kid’s not having that same fight. I guarantee that what is she in kindergarten, or first grade, kindergarten. So I guarantee that the your next door neighbor, their kindergartener is not getting a note home saying they did this, and they did that. But I guarantee, if you sat in that classroom, you could send a lot of notes home, because you know, and but that’s what we’re, that’s the weight that we’re forced to carry, we were asked to carry this way that says, Your child is different, and your child isn’t different. Your child has the same right to an education with supports to access the curriculum. And that’s their civil right. And it’s the school’s job to do that, I think, because historically, they haven’t done that job, that it’s kind of gotten muddled in their brain that no, that is your job. That is actually your child’s civil right. And, and so finding, but finding that way there’s I’ve yet to Liam is in an amazing school now. So we don’t have these challenges, but I’ve yet to find an educational institution that has any humility, and the fact that they’re behind the ball, because of, you know, in society, how we’ve, they’ve educated individuals with Down syndrome, they, so they’re, like, if they would just admit, hey, this is the first student, so let’s do this together. But we’re going to do our very best and we’re trying really hard instead of having, you know, you carry this extra burden, like it’s something extraordinary. What they need to be explaining is, why is your daughter, the first child with Down syndrome in their school? That’s really what what they need to that’s the question that needs to be asked. And I would say, you know, going into I’m the worst, because I’m not gonna let you cover that it hurts. And I’m not gonna let you take us through.
13:54
It did take us a few years, even mentioned, carpenter Community Charter, which is the school that Liam was for elementary school, it took us a couple years to actually, like, say their name on this podcast is like to call them out, you know, and it’s just
14:11
and it’s not calling them out. It’s just like, if, you know, if somebody, if somebody hate your car, you would take a picture of it and post it on Instagram and say, Hey, this guy hit and run, you know, well, it’s like a hit and run from the school district, you know, and there’s a certain amount of accountability and I feel like they may never be accountable because we were told carpenter community charter would never be accountable for Liam’s denial of his education. They may never be accountable, they may choose not to be accountable, but I won’t carry that burden. I won’t, I’m not going to protect it because it’s, it’s wrong. And that’s one thing in the education system that needs to change like your daughter has Crohn’s there there. There are other kids with you know, different challenges and health challenges. I guarantee they don’t make those parents feel bad about it? Like, you know, if if they actually, as educators, they should know that yes, if your daughter has something with her, you know, her digestive system that always expresses itself and behavior. And just so you know, your daughter is seven in kindergarten. Our daughter got COVID in 2020 sat on the couch and was like, um, yeah, I just don’t think I can go to yoga and she had COVID and ended up with 103 degree temperature hours later. But that’s, that’s just the nature of a child. So it’s not like, like, I think Liam does the same thing. You know, where he’s, he’s not going to bellyache it’ll come out and like different behaviors that I’ve had to just like, really be like, Okay, what’s going on,
15:47
you can tune him, you
15:48
know what he does, he’ll hug, he’ll hug you say, I love you, which doesn’t go with like, I’m sick. But we’ve learned that when Liam’s like I love you, like, Can I hug you? I love like really saying, saying it? Can I hug you? I’m like, do you have to go to the bathroom? Yes. Are you okay? Totally. Do you feel okay, where does it hurt? And I start to do this thing. But I just, I want to acknowledge with you that we’ve learned that because that’s the same thing our daughter did. You know, but I think I do, I do think there is something about individuals with, with Down syndrome, having a higher threshold of pain, which which can present a problem in those things. Yeah. But I just I kind of want to just put like a, take some of that weight off of you, Jamie, like don’t, I don’t like to see you like carrying that burden of, I feel like the conversation you’re having is you’ve been made to feel like, like your child’s been kind of singled out. And I think that if your child has Crohn’s, and you have to go through those, that’s, that’s enough. That’s enough to carry. That’s like for any for any parent whose child has Crohn’s and to be able to find it. And that’s why I asked about the doctor, because the first thing I want to know is is that doctor listening to you, and is there, you know, like, like respecting how you feel, or they like doing that thing that people will do when it comes to individuals with Down Syndrome and not giving them equal medical care. And that was that was why I questioned you like that, because it does happen to our kids where it gets just like, brushed off and put put to the side. And I can totally
17:22
relate with what you’re feeling and how you’re seeing right now.
17:25
I mean, with a doctor, we certainly had to push to Right. Like he didn’t want to believe that that was what it was right? And I think that’s just he’s trying to rule out what’s most probable. But we pushed and said, No, let’s do it. Let’s keep going because something Something’s off. Yeah,
17:43
that’s funny, because that should be the opposite relationship, like you should, the doctor should, shouldn’t be pushing for something. And the parents should be going, I want this not to be
17:50
I was the one who was like, I don’t want this to be and my doctor was like, well, let’s just roll this this out. But I think it’s important to tell that story. Because, you know, there, there are parents that their doctor pushes back and they automatically in their brain go, well, they have to know they have to know best, like they know what’s best. But no doctor knows best, you know, the best doctor will admit that there, they don’t know. And that’s why things can be a process. But I just wanted to to
18:19
end the struggles with school. I mean, even if it goes which it can probably does go even beyond behavior to education. It’s it’s a thread line and in why we even created this podcast, it’s it’s something that, you know, if other parents know that this is kind of what everyone’s going through, no one’s alone here. Things need to change. I understand you’re saying that the district has, you know, this, which kind of rubbed me a little bit to me, too. It’s an inclusive school, but most of the kids with IEP go there, that’s not inclusive, but I understand what they’re trying to do, you know, in a slow motion scenario, but, you know, our educational system is archaic when it comes to relating to, to our children and to in a lot of aspects, all kids, right. And so it’s struggle and
19:16
and you’re experiencing a lot right now you’re carrying a lot. Yeah.
19:20
And the health of your child. I mean, Crohn’s is something that can you can manage, but you know that your child’s not, you just said uncomfortable is uncomfortable. It can be painful, isn’t absorbing nutrients. I mean, there’s a lot of aspects that you also are dealing with, you know, the care of your child. So if that gets emotional sometimes then, you know, let that be emotional. Yeah, I
19:45
think I think the hardest part about it is that you’re refusing that she’s on the Remicade. One of the side effects of that is it’s going to lower her immune system, right and she’s already susceptible to Shirdi has a week immune system. So now it’s even weaker. And then the other side effect is that it will increase, or it increases her probability or susceptibility to leukemia, I guess that’s probably the right way to put it. So that is one side effect. So like, those are the things that weigh on us to where it’s like, oh, boy,
20:22
too bad. There wasn’t a cruise or something you could go on that would help you to like, retreat, retreat to like, bond with some people, and have a little bit of respite. But no, I do. And I do. We do have a lot of episodes about education. And, you know, it does start very young that unfortunately, we are made to oftentimes fight for that equal education. I think that having communication, daily or weekly communication that should work for you, but just like they’re saying, These are the problems, you they need to be communicating with you the things that your daughter is doing, how what she’s learning and how they’re supporting her. So instead of them just saying, Oh, she did this, is there anything going on at home? What’s going on at school that could also be like, is she receiving the support? Is she in a classroom where there’s nobody’s taking notes for her. So things are going ahead are there means that she can also express herself because as obviously, you know, the expressive language does come a little bit later than the cognitive. And in a lot of times, what they’ll say, they’ll use the fact that the expressive language comes later, and they’ll be like, well, she’s not learning anything. But that’s not true. But you can imagine, I always tell people, you know, when you get that sore throat, and you lose your voice, and you’re trying to talk to someone, and then finally, you’re just like, so frustrated, you’re like, forget it. I think that’s how I related to my son when he would try to talk to people and his expressive language wasn’t there. So I would also ask, as they’re asking you these questions there with her, let’s talk about what could be happening in the school day, that would also result in these behaviors, you know, and, and make that make that communication work for you. I honestly would always type the like, when I’d get something that just even if it’s set, right, and I wanted to let go, like, I did an email, just so it’s in writing. And if there was any other question, I print it out and put it into the office. Yeah,
22:28
what we’ve had is, is well, email and then they call. Yeah, and then we send the email follow up,
22:35
right? Yeah, that’s what I was gonna say. Yeah, thank you for that phone call discussing this. This is what we understood from your phone call. Because a lot of you’re so smart, they love the conference, take that phone call as Oh, they called us. They, there’s nothing on the record about what they said. So if they call you, yes, you you summarize the phone call and send it back to them. So that there’s and that’s for every you know, this because you do it. But that’s for the parents that are listening, is those phone calls, you need to document what’s said to you, and, and the best way to do Yeah, and through and, you know, I, if it’s really, really important, or I want to make sure it’s like really like timestamped I, I do a I print up a letter, I take it into the office, and I get it Stein timestamped because that goes into the actually stamped with the date and the time. So there’s no, there’s no saying I didn’t get that email, which, you know, they do
23:33
think well, we’re what we’re finding with the school as we investigate this more, right? Like it’s a bigger classroom. It’s bigger than the classroom she was in last year. And it’s a little bit loud and disruptive. And she doesn’t handle that well. So she like initially, when she started there, what we were hearing is, you know, she leaves she bolts from the classroom all the time, she doesn’t want to come back in. And then when we found out how loud and then it’s like, well, that’s why like she needs it’s too it’s too much for her. There’s too much too many stimuluses too many, like, it’s, it’s just a lot and getting the school to catch up to that way of thinking has been challenging. But it’s just it takes persistence. I
24:10
would say the classroom is loud. And it’s it’s overwhelming. And and we know that so how about headphones to be used that will soften it. And it’s not something that she has to wear always but you know, like Liam benefits, my daughter benefits from them, like in you know, in loud, like assemblies and things like that. And that’s something that you can say, Look, we also
24:34
pushed Liam to the front of the class. And so a lot of the distractions were behind them that and that’s something you should be that should be your eye. You see a lot of times, children with APS or especially a child with an aid is put in the back of the class. Like it’s thought like, oh, well, when we have to easily pull this child out. Let’s just do that and not disrupt disrupt the class well, let’s put the child maybe in the front of the classroom. maybe to the side of the front, but like, you know, where most of the distractions are behind the child, and then you can still leave? I mean, come on, where are we suddenly talking about? Oh, it’s disturbing the class. Well, we already know the class
25:11
out loud and disturbs my child. So and but don’t let them use that to try to push you out of the classroom. Right? There. There are supports. And that’s what what we always want to strive for is that sounds like a challenge. What do you normally do? When it’s over? Like, you know, and this is what we need to do, to uphold to a right to an equal education. And you should, it should be a collaboration with you like you can, it should be a collaboration, they shouldn’t just tell you what’s going to happen. But you can collaborate and it’s always good to, to know what you want to ask for to make sure. And if you ever have any questions, you can always reach out. Yeah, we totally understand. We went through grade by grade and had to learn to know what to ask for the verbiage to use, and all of those things. And so
26:02
you must really be excited about the rock and retreat coming up.
26:08
But that’s what we, that’s what we have you on is to talk about the rock and retreat. That is something that, you know, obviously, just from this conversation, it’s like we need
26:17
as parents are feeling Yes, things similarly, yeah.
26:21
But we wanted to catch up with you, instead of just going straight into the rock and retreat, and just Yeah, no, I
26:27
appreciate that. It’s, it’s, I’ll just give a shout out to my wife, too, because she’s the one who deals with most of the stuff with school because I’m working and then I get to try to help but it’s, it’s, it’s exhausting for her, right, like having these questions and trying to trying to advocate is tiring, but it’s important. And all I can do is try to support her as best I can. But But thank you, thank you for, for catching up. And for the offers of support, I think it’s it’s important, she
27:02
can also always reach out to me, because that’s how the dynamic works in our house. You know, I had to be there on the daily, you know, keep making sure that services were being they’re asking for the logs and writing all the letters. And those letters are exhausting. And that’s why I say she may want to reach out because I have a backlog of I saved every thing that I had to ask for and just like documented everything along the way. But I will say this, and it’s just horrible. It’s a horrible. It’s a horrible reflection on society, that what I would do is when we had to go into the office and ask for something, especially when he grew his beard out long, because it’s not. Yeah, it’s not this is just ridiculous, because he looked like he he commanded. Isn’t that stupid, she landed, respect, I would stand outside the door. And I would say, and I hope somebody from carpenter is listening to this because now they know, I played you. We knew who you were, I always tell my daughter when you know who someone is, except that and learn how to deal with it. So what we did is we stood outside of the door and I said, this is what you’re going to ask for. And this is what you’re going to say exactly what he’s an actor. So we crafted the direction. And
28:16
you could just you know, listen, you dress up as Daddy Warbucks that’s the time to do it. Right? Go go in there as billionaire Warbucks and tell him how it is. And that’s how sad that’s how society is.
28:28
It’s so true. And the dads there, they listen more which they shouldn’t,
28:32
which is an we’ve we often joked in the IEPs that we would have before we had a lawyer in every IEP that we you know, we could we could honestly because lawyers are so expensive. And there was one point that we went, we could honestly just like ask our friend Renee to put on a suit and just hire her to sit next to you. They don’t know they don’t know and the fighter even
28:53
know what to say, you know, she didn’t have to know what to say she could just like pretend you whisper in our ears. Lori knows that.
29:00
And she was like, Oh, you have to do is like lean in point to a piece of paper. Both of you share a tiny, tiny note. And then just just Yeah. And like they don’t like they really do give ourselves five grand. Because because we know the law. We know the law. And I think the game with the educated like unfortunately, it’s stacked against still hoping that it will change. And then it is changing. And I think it’s changing some places quicker than others. But you know, it’s the fact of the matter is it is the law. It is the law. And the verbiage is written into the law. And the closer we can stick to that without emotion I find and now you’re talking about someone who who would get very emotional but what I learned was if I can go in there and just by the time he was in fifth grade I was like this is this this is the law you broke this is this is what you need to do the facts, ma’am. Just yeah, just the facts. The better off the better off we are because then they don’t have anything that they can do and
30:01
shout out to your wife and, and literally every everyone listening can always reach out to Lori, she has basically letters almost every form letters from every grade till just at least give you a template,
30:14
and then just grow your beard a little bit.
30:18
grow the beard works. Right, right, growing the beard is that
30:20
so? I think a system that can be broken by a beard is a system that really needs a lot of work. Yeah. So let’s talk. Yeah,
30:29
thank you for the update. But were there any changes with the downstream diagnosis network this year? Or how are you guys doing?
30:36
So we’re doing, we’re doing really well continuing to grow. I think I’m allowed to talk about this. But we’re, well, we’ll find out but we’re we’re we’re focusing, we’re trying to build our own app, to reduce our reliance on Facebook and things like that. And we are literally testing it right now. So we’re really excited for that to roll out to kind of have a dedicated safe space for all of our current and future members, right, just to have those resources, that space for community that’s not reliant on all of the Facebook drama, and we’ll still have that social media presence, but our goal there, right, get our community somewhere where they can be supported, specifically, again, on that zero to three. But so the diagnosis experience those those early years, but then also building those lifelong connections, which obviously, you know, my daughter’s seven, a lot of our membership have all their children, which is great, and we’ve built some really great. I personally have built some really great friendships throughout the community. But our focus will always kind of be on how do we support new parents new and expecting parents right with that diagnosis, but then also the providers who are delivering that diagnosis, right? How do we work to continue to change that, because as you know, as many other parents know, that can be a very traumatic experience, that our goal really is to change that. So since things are starting to pick back up from COVID. We’re focusing more now on on like, the Medical Outreach side of things, and how do we get in touch with more providers, than we’re also focused on funding, right, because we’re primarily funded by our membership, so like peer to peer donations. So how do we become more sustainable as an organization to make sure that we can be around for your parents for a very, very long time?
32:43
Well, the app is brilliant, because when I was thinking about this conversation with you, and I was thinking last year, and it’s been a few years, just with every platform that’s on social media, there’s negativity, where reasons people are getting off that particular platform are switching to something else. And to be more independent of x, or Facebook or Instagram, you know, there’s tick tock, there’s pros and cons, all those, but to have your own independent app seems so streamlined seems so you know, just we’re just about members. And also, it seems like a easy access tool to be given to new parents to, to to be, you know, advertised I guess, would be the idea, you know, in a lobby of a, of a health care facility, but like, you know, what, doctor to pass on to patients. What a nice, easy, clean, independent, without the drama of all the other aspects of, of the internet.
33:49
I think also, like, when you’re on social media, a lot of you there’s such a gamut of individuals. And I think we really, I think the experience on social media is, you experience the change in the journey, like you have new parents who are so happy, and they’re posting these photos of their newborn. And then you’ll have conversations of older parents who experienced that the denial of education, some, even the institution institutionalization, or that their child was told that would, you know, burden their family and they tried to take their child away, and those conversations, and those experiences are so different, but as a new parent, or as a parent, when you go on, you don’t know, the information where it’s coming from, you don’t know where the opinion, where it what it’s rooted in, and it’s, it’s always a reflection of our journey. You know, it’s always a reflection of what we’ve experienced, like in 20 years, somebody might come through the school system with all the supports and equal education and try to talk to me and I’ll be like, what? First, you got to fight and they’re like, No, we don’t have to fight anymore. You know? It’s like so.
35:01
So even as specific as a Facebook page is where maybe all that could be kind of pushed away, and you’re only dealing with a zero to three year old parents, you still have to be on Facebook. Right? Right. So yeah, that that can be,
35:11
we can end the amount of in because there and I think a lot of the really great information that’s out there, like the tools that really support even before diagnosis, there’s so many really great supports, there’s so many books, picture, beautiful picture, books, baskets, you know, supports for, like, different parents and family just to like, really understand uplifting stories that negate a lot of these, you know, misperceptions that have been passed on the list. But But what that list really means and how to find supports, if these are some of the, you know, challenges or situations that you have all of that to have it, I’ve tell you, if, if, if you went to the doctor, and they said, This is your diagnosis, but there’s this really great app, you know, that you can find in your area, like, medically, you know, like,
35:59
the data information, you should really have, what should you have? What
36:03
tests should you ask for? That would just be the information with the absence of, you know, all the other influence, I think, I think that’s, and that’s what we need to because we’re also we’re also processing and dealing with our own thoughts, and our own perceptions, you know, and fears, and all of those things that are very, very real. And I always want, you know, that’s whatever your journey is, and whatever your thoughts or feelings are those those are to be honored, you know, and it would be nice if the other infirm, because information and knowledge is power, you know, and it could really, I think it would, would transform I know, it would have transformed our our journey, like, you know, what is a regional center? What, what is appropriate for them to say to you, you know, things like this, you know,
36:51
yeah, and a great way to advertise the retreats. To get that information to your to your members,
36:58
would we still like to put a link in to your Facebook page in your group in the show notes? Yeah, it’s
37:04
still it’s still gonna be a front door, right? Like, we have to be out there where people are and be visible so that we can bring people into the app. So we will will always have a social media presence of some sort to at least bring people in, we’re working on like our search engine optimization as well. So that when people are searching for that, like I just received a downstream diagnosis, what do I do to make sure that we’re there and we’re providing that support, but I think there’s so many different ways that people because it’s so we just started a tic tac toe, right? Like I don’t tick tock my wife love that. I know if I took tact, I wouldn’t be able to do anything else. Mindless nonsense. But we just started that right, like so wherever people are, wherever we can get that word out to try to bring in and be that resource for people is important. So yes,
37:57
absolutely. So you’re not just Facebook, there’s Tik Tok Instagram, to Twitter, Instagram as well.
38:04
I don’t think I don’t know that we have a
38:08
right x? Well, you can give us the will list all those things? Yeah.
38:12
What do you do is you’re just like art because you sound very smart, and technical. Professionally,
38:17
I work for General Motors. And I do. I’ve done customer experience, customer service, customer support forever. Currently, I do customer success for OnStar business solutions, like my team that I manage works with fleets, who buy GM vehicles, and then use OnStar. To do like the vehicle telematics to best manage their fleet, right, like so. In a way it’s technical from that aspect, right? Because there’s your, your car these days, basically a giant computer, right? And there’s so much data that can be pulled from that computer to help you manage, like when you need an oil change what’s wrong with your car. So like, it’s super valuable to people who drive for a living to know, when they might experience downtime, or when they might need to maybe do maintenance, what have you to make sure that the vehicle stays up and that they minimize that time off the road. So that’s kind of what my team does. Well,
39:18
it’s technical, but it’s also like, people, the people, you know, to customer service. So yeah, your perfect asset for for dsgn. Really, I mean, I think it’s
39:28
it’s like as you’re talking about like with the car, I’m thinking like, oh, well, that just translates so perfectly into does. I was just wondering, because when you were talking your brain, my best friends and engineer and your conversations sounds like that same side of the brain. So I was I was just curious. That was a personal that had nothing.
39:46
My dad, my dad was an engineer if I did not go the engineering route, but I’m sure there’s a lot of that it’s in there in my DNA. Right. Right.
39:54
So when are the retreats? Yeah,
39:57
so the dads retreat is going to be July 12 and 13 That’s a Nashville this year. We’re really excited to go to Nashville. We have a lot of fun things planned that I’ll get into here in a minute. And then the moms are treated September 27 and 28th. And they are in Las Vegas. Wow. Right outside of Las Vegas, not on the strip there at the JW. Marriott, Las Vegas Resort and Spa.
40:23
Oh, yeah. Right. Really quick. For people who didn’t hear the first episode we had with you about the retreats, you want to talk a little bit about how they came about and what the retreats are.
40:32
Yeah. So the retreats are, essentially they’re an opportunity for parents to have a respite weekend, right, the opportunity to have some time with fellow parents who get it so we do a moms and dads retreat, right? The moms is for moms only there’s disclaimers on there, you know, like this is parents only don’t, you know, arrange for childcare. Same for the dads, the moms will get anywhere from 400 to 500. Moms that will register and calm and just have an opportunity to meet up with people that they’ve developed friendships with online and do it in person. But then it’s also right, like, you go and you’re there with people who are going through a lot of the same things. So you almost don’t even have to talk about it. We all do. But that’s the that’s the bond that ties us all right, like we, I, when I go to the dads retreats, it’s like, you’re also a father would have a child with Down syndrome. So we don’t even need to like cats out of the bag. Like, Let’s just hang out and talk and figure it out. And eventually, like I said, everything kind of ends up Oh, tell me about your kiddo, and so on and so forth. But it’s really focused on fun, but then also some education. So so for the dads retreat this year, we’re pretty excited, we have a couple of pretty cool speakers that are coming. So Chris and Nick, Nick itch, are going to come to the retreat and talk to us. So for I’m sure everyone is familiar with Chris, the first Iron Man with Down syndrome, who completed the Ironman and then his dad is going to speak to us as well about the 1% better system that he developed for Chris, and how all of Chris’s great accomplishments and stuff like that. So we think it’s really important to have a self advocate there as well. Last year at the retreat, we had a self advocate, his name was Emanuel Bishop, he’s incredible golfer with my golf game to same, but that’s not all that hard to do. But he he’s a very talented young man, we also have, we’re going to do a dads panel this year. So we have some dads who have older kiddos, we’re going to talk a little bit about some of their experience. Some dads who have helped change legislation locally, to talk about their experience and just kind of give that opportunity for dads who have younger kiddos to ask questions, understand what they could or could not expect. Right? Like I think the message there really is, is hope, perseverance. And your kiddos are capable of doing anything that they put their minds to. With the right. You’re just really excited. It’s gonna be fun. So
43:27
yeah, we had a couple episodes with Chris, just prior to his first his first Ironman, because he’s done it a couple of times. Right. And, and, yeah, fascinating. And to see that story, just progress and a goal, like, over and over the goals being met, you know, you can see how you just break that down. And it inspires you to do the 1%. Right, just little increments for anybody.
43:55
What I loved about Chris’s story is because his dad wasn’t like out of the gate. You’re gonna do anything you set your mind to it. And he’s very open about that. It just took him changing his mind about his son, and how quickly that changed the the trajectory of his life. That’s what I enjoy most. Yeah, because I think as parents, sometimes we can feel like a little guilty of ever doubting or, you know, how long is it? Like two days, three days, two days officially?
44:24
For the dads, most of the dads? Wow. Probably like 50 or 60% of the dads will show up that Thursday. And then we have our unofficial or unofficial Thursday night, but it’s technically it’s two days.
44:37
Is it? Friday, Friday night, Saturday, Sunday, they go home? Yeah,
44:41
so we will kick off Friday afternoon. And then we’ll have some kickoff speakers and then an event that Friday night and then Saturday will kind of be most of the day we’ll have some things in the morning or well, not super early in the morning because it is a respite weekend after all, but Do a couple of more speakers and then have an event that Saturday night and then everyone takes off on Sunday. Last
45:05
year, there was some kind of sporting thing that everybody was looking forward to for the what was that? Is that and you said you do a sporting thing every Yeah.
45:12
We we we unofficially kind of have done a sporting thing most times. So this year in Nashville, because of the time of year we are hoping to go to an MLS game because they have an MLS team there. But unfortunately, they’re out of town. So we’re still finalizing the events. But if Nashville so we have lots of options, whether that’s live music, whether that’s there’s been talk about line dancing, I’m not a big fan of that. I’m just not, I’m just not coordinated. But we are still finalizing what the actual events will be. But But yeah, so last year, we went to the St. Louis Cardinals game, we had a suite at the Cardinals game, which was really, really fun.
45:54
That turned out really good. Yeah, it
45:57
was a great day. The Cardinals weren’t good last year. So there weren’t a lot of people there. But it was a lot of fun. It was Jersey night. So everybody got a free Jersey as well. Oh, that’s great. Just like the little swag things, a little things to remember. I was fun.
46:10
And that’ll be something you’ll nail down like in the upcoming months, I guess. Well, yeah, we
46:15
we meet. So there’s three of us. Plus our executive director on the dad’s planning team. And the same for the moms, I think there’s three moms and then the executive director will plan it. And we finalize the dates the hotel, we’re staying at the a loft hotel in, in Nashville. It’s natural, so expensive, the hotels are crazy. So we like we got a lot of feedback last year on the hotel cost. So we really try and keep it around $200 A night whenever possible, which was more challenging than expected a Nashville. But I think we found a pretty good location that’s close enough to Broadway and like Music Row and all that to where we can do a lot of different things and just have a have a really great weekend. So
47:03
the best avenue for someone listening to us right now to find out more about D SDN, and, you know, possibly join the group would be the link that we share for the Facebook page, or is there a better website.
47:17
So the right now, so we have a website, so it’s DS diagnosis network.org. On that page is where you would register for the retreat and learn more about DSDM as a whole. All of our groups are on Facebook right now. So if you have a child with Down syndrome, what you would do is you would join a group on Facebook, and we kind of grouped people by their birth years for moms. And then the dads because there’s fewer dads, although we’re growing are just all in one single dads group. But then the moms are segmented out by birth year. So there’s like the first six months of the year, and then the second six months of the year, that will each have a birth group, just to keep it manageable in size, right. And then it’s also because you’re paired with a birth group, you go through a lot of similar things at the same time, which is really helpful from a support perspective. Because what my daughter Ellie was going through it, too, is probably the same thing as other parents. So you have that resource that network, like, you see a lot of questions. Hey, even in the dads group, hey, dads, have you ever dealt with XY and Z with your kiddo? And what have you done? And that’s the really beautiful thing about the community is like, people just they pile on support, right? Like, this worked for me. This worked for me, this didn’t work. tried this. And so you get a ton of ideas, resources, suggestions. To try, which is great, because, as you know, it’s not one size fits all.
49:01
And your group is primarily for zero through three. But do you have some groups that now that like Ellie’s older as as the as, as children?
49:12
They continue relationships? I
49:14
guess. So if someone had a seven year old, is there a group group that they could join?
49:18
Yep, so we have the birth group starting from, gosh, I want to say like 14 or 13 2013 14, somewhere around there on. So you kind of get paired with that birth group. And if anything before that, there’s like a larger group. It’s just smaller, right? Like, as as we get, as the kiddos get older, or if you join later, it’s less likely that or not less likely, but we see fewer people join later on in life when their kid was older, so it’s more focused on that diagnosis, which is kind of the birth year but but there’s a spot for everybody. We also have specific medical groups, right like so if you have open heart or Crohn’s dual diagnosis first prongs, so there’s specific medical groups that you can join as well. And then there’s also different like socio economic groups. Like if you’re a single parent, if you’re a divorced parent, there’s a group for if you’ve experienced loss, which is unfortunate in our community, but common black parents, Hispanic parents, all of those different things to try to make sure that everyone has a place and feels like they have a support system that can relate to them. That’s beautiful. Those resources. Yeah, you’re
50:39
inclusive, and you create a sense of belonging, which is really, yeah, you said the women’s you didn’t really talk about the women’s you said that they were in just outside of Vegas this year,
50:49
October 27, and 28th at the JW Marriott Las Vegas. So the since the moms are bigger, it’s more focused on like a resort type setting. Right. So there, there’ll be massages last year, they were at JW, San Antonio, the big Lazy River, just so so their focus is more on the event on site. With the dads because we’re smaller, we’re our goal is about 60 Dads this year. It’s more about like being centrally located in the city so that we can go out and explore and do things around there versus having everything in one
51:22
spot. Cost, what is the
51:26
perfect sense of just about to go for so the registration is $400 to register for the event that that gets you all the activities. There’s the speakers, the events, the swag, what have you, all of that stuff is included in that cost. There’s meals, so for the dads, there’d be a dinner Friday breakfast Saturday. I think we’re talking about doing lunch Saturday and dinner Saturday and then breakfast Sunday. And then like I said swag will do a night or nights out things like that. It’s all included in that. But there is also the opportunity to fundraise. So if you start a fundraiser for DSD, and if you raise $500, that covers the cost of your registration. If you raise, oh gosh, I pulled it up because I couldn’t remember all the details. But if you raise $1,500 To get your registration plus a $400 visa card to help with costs for travel, things like that. So there’s different tiers that are outlined on the on the website as well of what you can fundraise for. We’re doing something with the dads this year collectively, where if the dads for every $5,000 that the dads raise, specifically, we’re raffling off a registration. So every $5,000 We’re giving away a $400 registration, we’ve raised almost $25,000 so far. So we’ve been able to raffle off for registrations. Our goal is $50,000. We’re working to get there. But it’s just a great opportunity for us to give back to the other dads who were perhaps the financial amount is a blocker to try to get more dads and everybody to have the opportunity.
53:10
And you’re saying you think that got the hotels down to about 200 a night? So
53:14
for dads the hotel cost is $199. You did it? They’re barely the same. It looks like the mom’s was the same 199 Okay. Well,
53:28
every episode, we ask our guests to supply a photo, you know, for our thumbnail, if you have a photo of you as Daddy Warbucks I’d love the thumbnail for this episode.
53:39
I’ll send that one. Yeah, we
53:41
know the importance of self care and mental health. Self Care is mental health. And so I think that, you know, if you’re listening, and you can take that break, like really do that for yourself, because there’s the whole you know, that story your kids and and she should be reading in kindergarten, probably I think it’s first about filling your bucket. And you know, we need to have our bucket filled. And sometimes as parents, any parent, and I shouldn’t even say sometimes, as parents, we tend to empty our bucket and we forget to fill it up. But but we need to do that. And this is a really great opportunity. And it’s a it’s a special opportunity because you do have your community with you. And I think that we don’t know how important it is. Until we do it and that’s when I think we realized the the importance of it, you know, just to even if you if you’re I’m gonna tell you okay, I have social anxiety. So I’m not a big social, I don’t, I don’t do well in big crowds. So you maybe you go in there and just even if you talk to one person, I guarantee there’s other people there that crowds are hard. We didn’t we didn’t do a lot of the good groups, we didn’t do any groups, we didn’t do any groups with Liam, because there was so much on our schedule already with all of the services and advocacy and everything that we’re doing. And, you know, what ultimately happened was when we left carpenter Community Charter, the school that denied our son’s education and civil right to an education, we had, like six months to a year of decompression, where we realized exactly what we’d been pushing through and what we’d been carrying the entire way, because we carried it, when we kind of carried it alone. Like we didn’t, we didn’t go anywhere to talk to another parent, because we didn’t want to like, honestly, there aren’t very many parents around, and everybody’s carrying the same, you know, fight for education, advocacy for your child, all of these things we’re all carrying. And sometimes it can feel like, you don’t, either you don’t want you want one moment out of your day, or you’re not talking about it, or do I if this person is having a great day, I don’t want to talk about my fight for an education and how, you know, I found out that none of my child services were being rendered, you know, the last six months. So this is a this is an opportunity to have a little bit of, of freedom from any any kind of self judgment, because we’re all in the same place. And if nothing else, there’s some time to heal, and breathe. Because we don’t always we don’t we don’t do we we don’t get a breath all the time, do we? We don’t take it. So thank you for doing thank you for doing this for the community. It’s it’s very special, and it’s very needed. Thank
56:44
you, Ben. Yeah, well, I’d
56:46
love to take all the credit, but it’s not me. But
56:47
thank you, Ben, who did it single handedly takes
56:51
the village and I think it’s, it’s, it’s been so incredibly valuable, just to me personally, as well. Like just the relationships I’ve forged. And I have dads across the US that I know I could reach out to if I if I needed to write like you have that lifeline, you have those friendships. And it’s one of those things where like, I see these dads once a year, but you just pick, you pick up right where you left off. And then you make new friends to like that’s, I think it’s always daunting for a new dad who maybe doesn’t know anybody to show up. But this group of dads does an incredible job of welcoming new people making you feel valued. Like we always say you get in you get out of it, what you put into it, right? Like if you come up there, and you don’t want to talk to anybody, and you want to just do fly solo, that’s fine. If that’s what you want to get out of the weekend. Do that, that’s great. But if you want to meet some new dads, share stories, hang out, make some friends, like you can have that too. It’s entirely up to you and as far as what you get out of it. We just tried to provide the venue to to our
58:07
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If We Knew Then - A Down Syndrome Advocacy Podcast 