Transcript
Hello and welcome to the If We Knew Then podcast. I’m Stephen Saux.
0:32
And I’m Lori Saux.
0:34
And today we’re joined by Ben Hughes, from the Down Syndrome Diagnosis Network (DSDN).
0:40
This is a really fabulous online support for the Down Syndrome Community with a great focus in parents of children from zero to three, from diagnosis on,
0:53
specifically this time of the year they have in person retreats for moms and dads. And so we talked to Ben about those. We talked about the online network and their Facebook page, and a little bit about his seven year old daughter, Elliot.
1:09
This is one of those interviews that gives me hope that things are changing for our community and for the parents that come behind us the information that’s now within our reach the community, and the message is changing the narrative. And it was such an honor to meet and speak with Ben.
1:32
So welcome, Ben Hughes. Hello. Hi, Ben. How are you?
1:38
I’m great. How are you?
1:39
Yeah, doing great. Thank you. Let me remember where you are in the country, just outside
1:44
of Grand Rapids, Michigan.
1:46
We know a lot of really cool people for Michigan. Yeah, we do know a lot of Michigan has some pretty stellar individuals.
1:53
We are America’s high five as they say. So we have to be cool.
1:57
For reality, is that what they really say?
1:58
Because of the hand, it shaped like a hand.
2:01
Yeah, a buddy of mine in college has a shirt that said America’s high five for Michigan. That’s great. So I’m on the board for the Down Syndrome Diagnosis Network. And I’m also one of the retreat directors. And we have upcoming retreats for our moms and dads. So our dads is August 4 And fifth in St. Louis. And then our moms is September 15 through 16th in San Antonio. And so this is our Gosh, what sixth or seventh retreat that we put on annually. So I was just going to share a little bit of information about that if you’re interested.
2:36
Oh, when you reached out I was I thought of the concept. I was like, Oh, this sounds great. I’d love to learn more here more and spread the word.
2:43
Yeah, no, I love it. So Down Syndrome Diagnosis Network is the largest national nonprofit serving new and expectant parents who receive a Down Syndrome diagnosis. So it’s from like, a prenatal diagnosis to birth. Our focus is really on parents with children who are zero to three and getting them accurate information. Because as you likely know, a lot of the information out there is very one sided negative. It’s getting better.
3:17
It’s very skewed and misperceptions. Yeah, that’s what we discovered.
3:20
Yeah. So our co founders, Jen Jacobs, and Heather Bradley started Down Syndrome Diagnosis Network back in 2014. Really, with the focus of how do we change that experience for new parents and make sure that they have accurate information, unbiased information. But then also, we do a lot of focus on working with providers as well, and trying to get them the right information to support a new parent with that diagnosis. So it’s really a cool org that I’ve been involved with for the last three and a half years now.
3:59
So when you say providers, you mean the medical community, the doctors and correct yeah, that’s, that’s something that we really feel like, it needs to be worked on.
4:07
Yeah, so a really cool thing that happened for us last year was the American Academy of Pediatrics. Now list, the Down Syndrome Diagnosis Network as a resource for new new unexpected parents. So that was a result of a lot of hard work from our Medical Outreach team to get us added as a resource there, which we’re really excited that it came to fruition.
4:32
I wish something like this had been around when Liam was born. And we are happy to pass this information on because it’s really the goal of our podcasts is to get that the information that helps us or and, and the correct information because
4:48
we were mentioned remember when you google Down syndrome, just what comes up, you’re just like, wow, that’s what that’s what happens. I mean, you know, 90% of people are gonna be using Google. And that thing that pops up is what you got And
5:00
the picture is a horrible picture that’s been around for a very long time with very. I mean, I think maybe some of the information may be correct. But the rest is skewed in opinion. And I think as parents of who have just received a diagnosis or a family member who had you who wants to support, they look it up. And I feel that all it did was propagate any kind of misperception or just all of the, the negative, yeah. And then that gets perceived as truth. And then that’s what carries on. So I, I’m so I’m so
5:42
used to me that’s kind of written because found you? Well, yeah, no, because this is from people that are generally involved in the community, when you think of the information that you usually get, like Google, or whoever it’s kind of an outsider can be a medical professional could be someone that’s maybe not 100%, impacted directly by someone down syndrome, and they’re just looking at it from maybe a medical point of view, or what they’re observing from far away education, or whatever it is. And we know when you hear the stories of people that are directly impacted by this, involved in this community. Yeah, it’s a different story.
6:21
So I pulled up your website, and this is really fantastic. Because under about us, you have a place where people can request materials.
6:30
Yeah, so a lot of our support. So we have over 21,000 members within the DSDN community, we’re primarily on Facebook. So we, we have our website, and then we have a lot of different support groups. So we we have what we call birth groups, right? So everyone, when you join, you’re placed in a birth group based on the year that your child was born. So it’s like the first half of the year and then the second half of the year, so that you’re going through that diagnosis journey, that braising your child journey with people who are going through the same thing, right, because we find that that peer to peer support is hugely impactful. Even like my wife, so I have a seven year old daughter, now she’s seven, who has Down syndrome. Her name’s Elliot, she’s nonverbal, she has autism, she has some GI issues. Hirschsprung is a lot of the other common diagnoses that you see with people with Down syndrome, congenital heart defect, et cetera, et cetera. And my wife is incredible, first and foremost, and like, we go to the doctor and things like that. And she knows more about these diagnoses than they often do just from some of these peer to peer groups and her own research, etc. And, and that’s where I think there’s so much value from just talking to people who are going through the same thing, which is a lot of what we try to facilitate with these Facebook groups, the retreats, etc. So there’s the birth birth groups, there’s medical condition groups, there’s parents specific groups for like, single parents, divorced parents, black families, Hispanic families, as many different subsets as we can get, right, just because there’s, there’s so much out there, and there’s so many unique things. And having that second opinion or that experience voice to help out is is really, it’s helped us tremendously. And I we hear that from our members as well, as far as the support they get there.
8:29
Well, I think it’s important that you have different subgroups, although like, you know, the overall goal is for us to understand that we’re all connected and on this path, but I think just to have different voices, because different voices and different marginalized groups have different experiences, any IEP that I’ve gone into, and I know how hard I fight, and I’m fighting in, in Milan in my first language, and and I have information at my hands. And I always wonder about anyone who doesn’t have the information or if English isn’t their first language, that how they’re impacted because of those extra hurdles. Yeah, and they shouldn’t be extra hurdles. So the supports are supposed to be there for for everyone, you know, as far as having a translator, but I love that you have made accessibility for different marginalized groups as well. I think that’s very important because that that journey as much as I’d like to, as much as I wish that it wasn’t different, it is different. And I think that that is really important tool to have,
9:37
and it stops any intimidation or any reluctancy to join a group if for some reason. You have different demographic you want to be around. I mean, that’s just is how it is sometimes where people go, Well, maybe I can relate to this person better because we’re going through the same thing in the same community, you know, but at least it’s there, you know, how does the retreat how the retreats work,
9:59
so We have one retreat every year. So this year, like I said, we’re in St. Louis for the dads and then San Antonio for the moms. But it’s a variety of different things, right, like, so mostly, it’s a chance for dads and moms to have a respite weekend, right? We don’t bring kids, it’s, it’s moms only, or its dads only just to have some time to have a weekend away, to rest, relax, recharge, and then spend some time with people get it right, people are going through the same thing. People who you know, from your online community who may be you know, I’m in Michigan, I’ve made some really good friends who are in California or Oregon, you know, all over the place, we’re going through a lot of the same stuff. And they’re a great resource for me to bounce things off of, if I have a question and vice versa. And then at the retreats, it’s it’s kind of a combination of, of like, the opportunity to learn, right? So in St. Louis, we’re going to have a self advocate, talk to the dads, we’re going to have someone from the Marin fund, talk to us about what they offer someone from the pools Foundation, the local org. Let’s see, we got about four hours of talks planned, right, just to hear a little bit more. Oh, yeah, we have a researcher who’s doing research about Down Syndrome and Alzheimer’s. And just to talk a little bit about the connection there and what he’s learning. Um, he’s also a father of someone with Down syndrome, which, so it’s like, that combination of, of knowledge, fellowship spending time together, and then we have fun too, right. So we’re going to do like a dad’s night out, we’re going to a bar in St. Louis that has a bunch of vintage video games and things like that, and just hang out and have fun. And then we’re going to do a suite at the Cardinals game, and just have have fun. More than anything, a chance not to think about everything too much. But you really, it’s really what you make out of it, right? You, you get into it, what you put out out of it, if you if you stay and you sit by yourself, and you’re like, I don’t know anybody, I’m not going to make any friends, you’re not going to have a great weekend. But if you go on, you’d let your guard down a little bit and have fun and talk to dads, you don’t have to talk about your kiddo with Down syndrome, you don’t want inevitably, it always ends up there. But you don’t have to write it’s what you make out of it. So this will be my third year going. And it’s been incredible. Every time.
12:22
Well, my brain is like splintered. Because I want I wanted to ask about your daughter first and how you came to this organization. Also, since we’re here. Now, you said you cater more towards children that are zero to three is that for the retreat as well or no.
12:38
So our online resources, all of that is really catered towards zero to three, but then also we’re catered toward, like fostering those lifelong connections, right. So making that ongoing support, there’s there’s a lot more support out there for, you know, as your children’s aging as they get into adulthood, all those kinds of things. So we really want to focus on on that initial that diagnosis experience, what you can expect the retreats, it’s Anyone, anyone who has a child with Down syndrome can join, you just have to be a member of, of dsgn, which is a really long, complicated process of joining a Facebook group. And then you’re a member. But I think our average age for the dads birth year is like 2016. So we’re looking at six, seven years old. So we really try to get more of those new parents to get them those resources and connections. But any age is is welcome.
13:33
I think that’s really important. Because I feel I feel like those are the years that bring the most exterior challenges. And you know, and I was just talking about this, that I think it was Liam is 13 now, and about three years ago, it’s about three or maybe four years ago that I just for the first time I took a breath, and I could just sit with where Liam was and see him really, really see him. And you know, we’ve spent our life advocating for him. And you know, being there present for all of his therapies. But I think those first years, there was a lot of fear about who your child would be, you know, those are the years where there’s so many milestones, and we have a daughter who is neuro typicals. And so, as well and you know, there’s that comparison as to the different the different developmental delays or going out to a park like, every day, things like the park, the grocery store, a restaurant, all of those things became so overwhelming, whether it was someone just that we didn’t know approaching us with, like, Oh, they’re such an angel, or someone that we didn’t know, you know, giving us some unsolicited, you know, telling me where I could put him because nobody wants our babies, you know, and those can Other things I feel like those are the years because while we’re doing all of that, we’re also trying to contend with having a newborn, where you know, whether it be an additional sibling or your first child, you know, those are the years that for everyone, you’re always on your toes, you’re you’re everything is changing and developing. And I feel like during those years, we get robbed of the celebration a lot. And it has nothing to do with the journey. I really, I am a firm believer of the fact that our challenges did not come from the fact that our son had an extra chromosome. Like if we would have had a supportive doctor in the NICU, I mean, medical wise, they rocked it, you know, as far as science goes, personnel wise, oh, horrible. And if they’re, if they’re, if those words coming out of their mouth, would have been ones of hope and support, and you know, like the pediatrician we found, or that we have, that was just like Liam’s gonna reach his milestones, he’s going to reach him in his way and his time, you know, the list of things that they give you to just say, these are some things to look out for, it would have helped us more like, if we would have been given that list with our daughter, it would have been like, Ah, thank you. But that’s that, thank you for letting me know that these are things and the there’s a support, and this is how I handle that. But none of that is and I’m I too am hopeful for change. But none of that was available to us. And because of that, we became very isolated. We knew parents, but we didn’t have, we didn’t venture out to any of the great support groups that are out there. Because we were so shell shocked, we just were like, We’re gonna stay here. And we’re going to, we’re going to be an are like before COVID, we had our own pod. And we just we knew that that’s where our strength was. And it would have been great to have had just to have the information and to know that you’re connected, and everybody’s going through the same thing. And it’s not what they tell you on the outside. Because you never get the same advice from someone who’s on this journey, you don’t get the same information that you get from someone who just like has read it in the book, but had no real experience with anyone with Down syndrome. You know, and this is really fabulous. I love it.
17:17
Also, you know, when you’ve met a bunch of people online, and you’re kind of going back and forth, it’s a great opportunity for a lot of people. I mean, I’m assuming not everyone gets together, but to just kind of make that connection, you know, face to face connection, then when you go back after this retreat, you go back to the online relationship for a year, what a difference that must be. And then you know, you probably make specific connections even deeper or different when you’re in person and then go from there. It sounds sounds really great. Yeah,
17:45
whether you do or don’t talk about Down syndrome on the retreat, whether it’s like, I’m just going to take a break and talk about the nail polish that I have on my nails, whatever it is, if that’s what you need for your brain, you know, I can relate to going to different meetings and gatherings with at school, where nobody was on my journey. And again, I just the the word isolating comes to mind because nobody really understands unless they’re on this journey. Like they they really don’t. And I think that that would be such a freedom. Yeah, even if you don’t want to talk about your kids just a freedom, because there are so many other things that we do, or how we feel like someone can just know, or have an not know your journey completely, but have an insight into what we do. There’s like there’s not I don’t Didn’t you feel that way? Like when we’re when we’d be around other pitches, their conversations, and
18:44
even without talking about it just that you’re there with a different with people that you know, even if it’s unsaid, unspoken, they understand. Do you understand things you can kind of get past that and talk about what again, right? What a gift one is,
18:58
you know, when you’re around your peers who aren’t going through it, your your childhood Donson almost defines you to them, right? Like, oh, you’re the special needs parent? Yes. And it’s gonna be harder to be friends with you, because we’re gonna have to work around this. And you know, maybe I won’t trace her. But when you’re around people who get it, it’s like, really want to talk about it, because we all know, right? Like, we’re all on the same journey. We have different steps in that journey, but it’s very similar, and it’s a really big weight off your shoulders in many ways.
19:28
Just real quick before we continue since registration is open, do you want to talk specifics about like costs and somebody that’s something you want to talk about? Yep.
19:35
So registration is open, technically closes in July, just so that we have enough time to prepare our costs $400 That’s for both the dads and moms. Both are the same costs. That includes all of the events, meals, it doesn’t include the hotel room, we have a block of hotel rooms at a discounted rate. The dads will show up typically, like half of them show up the day early. Just to reconnect with everybody, because it’s a really tight group. We’re expecting about we’re hoping for about 50. Dads. Right now we’re at 40. And then moms is usually around 400. Which is is huge. It’s it’s a great event for the moms, the moms will have lots of vendors there as well, different organizations selling T shirts, swag, stuff like that. Dad, since we’re smaller at about 50. We don’t have as much of that. But the dads will typically come in that Thursday night, before the event, just to reconnect and have like an unofficial hangout night. It’s a really good time.
20:38
So online, I’m seeing that the dads retreat, the Registration closes July 1. Yep. But you might extend it for the dad, we
20:47
might, it’ll get close just because it’s the August 4 and fifth. So we have to be able to have all of our materials. Typically we’ll we’ll do kind of one off registrations after that. If someone reaches out and it’s like I really want to go, and we’re able to accommodate it.
21:05
And then for the moms, it’s August 1 is when the registration ends, and that’s for the September correct is that retreat? And they go over a weekend. Yeah. And
21:15
you gave details about the dads go to St. Louis Cardinals game. Correct. What’s the moms retreat look like?
21:23
So the moms will usually since it’s a bigger group, they’ll usually have a bigger name speaker come in, which has been really great. And then they’ll do a moms night out, where they’ll go out, I think they’ll usually go to like a bar or a comedy club or something like that. And then they’ll have more on site events. For the moms just because the group is so big, it’s harder to really facilitate something similar to like a Cardinals game or something like that for the for the dads. But the moms are staying at the JW Marriott in San Antonio, which has a really cool Lazy River. It looks like they’re going to have a great time staying on premise. But since it is so big, that they tend to do more like on site type activities for the moms.
22:07
I’m looking at massage chairs. Yeah, there you go. And some yoga. So if you’re a dad that that is just hearing this and wants to go they can even though the registration will be closed, they can just reach out like one offs just in case. Yeah, reach out and see. Right. Yeah, just reach out and see.
22:25
Yeah, they can send me an email. My email is ben@dsdiagnosisnetwork.org . It’s also on the website: https://www.dsdiagnosisnetwork.org/
22:39
Okay, we’ll put all of this in the show notes. The retreats look amazing. And the great thing is, is that these are annual Correct? Yes. So if this year is like, if too much of a crunch for your schedule, you can look forward to it as something to look forward to for next year as well. Yeah, join the Facebook page.
23:00
Absolutely. In Facebook, if you just search the DSDN, it’ll pop up. There’s also links on the website to join a birth group.
23:10
So how did you come? How did you come to the Down Syndrome Diagnosis Network personally?
23:16
yeah, personally, so I owe all of it to my wife has any good husband does, right. So we had a prenatal diagnosis for our daughter, Elliot. She was born in 2016. And so we found out at about 20, some weeks, did the, you know, the genetic tests, there were some abnormal markers on our ultrasound. So they ordered the test, it was confirmed that she had Down syndrome. And so at that point, you know, everything changed, obviously, and my wife started doing a lot of research and trying to find resources and understand what’s out there found dsgn started engaging with them. We like to do things all at once and very complicated. So Ellie was born in 2016 and June, in September of 2016, we moved to Nashville. So she was about three and a half months old at that point. And then at five months, she had heart surgery. So at the same time we were buying a house in Nashville. It was a lot at once. And then my wife went to her first retreat in Chicago for DSDN. So we drove up from Nashville went there. She had a great time loved it went to the next retreat and Arizona and during that time I I wasn’t super actively engaged yet. Because I was going from one job to the next and just trying to figure out life with a less than with a one year old race was a handful. I mean, she was to bed until 10 months old and you know, just a lot of typical medical stuff that comes along with raising a child with Down syndrome. And then I saw, I joined the dads group, I saw that there, they were recruiting for a board member. And I said, you know, this is a good way for me to get involved more for me to help out. And I applied and the rest is history, as they say. So I’ve been on the board for three and a half years, and then I just became a retreat director this year, to help plan the retreat. So it’s, it’s been a whirlwind. But it’s been incredibly helpful, like, I would say, more so on a, on a personal level, right? Just being able to connect with other dads being able to share without judgment to share with, you know, with people who just understand who aren’t going to be like, have you tried this, that or that. And like, of course,
25:58
we’ve been doing this for seven years now. So that’s, it’s been a really, really great journey for me and my wife,
26:06
we learned that people, we finally got to the point where we learned that people are trying their best, and it’s just that lack of information that’s out there. Yeah, I think every parent gets their fair share of Help. Help. That isn’t, yeah, help with the air quotes. And, and, you know, and that’s something that would be great to talk to other parents about to because you, I think it makes you angry, because, you know, I don’t think that you have a voice when you’re talking to someone who’s coming from an in the gentlest way ignorance, but it is because in society, there hasn’t been much inclusion. And I don’t think that I don’t think society as a whole has really progressed very far from the times when our children were institutionalized. Like, education shouldn’t feel like a gift, or a favor, you know, things things like that. And I feel like that is the remnants are still there. And that’s why the help that we get comes from just people who don’t, they just don’t know. What what did you know about Down syndrome before Elliott’s diagnosis?
27:21
Nothing to be perfectly like nothing. I had never. I had never really like known if I truly wanted to be a dad. Just like going through college and all that. And then when I met Dana and we talked about it, I was like, Yeah, of course, like, I I want to be a dad with you. Right? Like, I think for me, it was about, about finding the right person to do it with because like, on my own, I was like, I’m too selfish to do your, you know, like, I’m too concerned about me. And then when you find that right person, it all made sense. And then little did I know that I’d get to be super dad had super dads the wrong word, but like, extra dad, you know, like, like, Ellie still wears diapers, right? So like, at seven years, I never like thinking about being a dad. I thought like, diapers will suck for like six months, a year, two years, whatever. Not not seven. But it’s been great. Like, I wouldn’t change it for the world, either. But yeah, so no, I knew very little about Down syndrome.
28:28
Just a quick about the diapers. I remember those times changing diapers. And I look back at that. And I think about how I thought of what changing diapers would be when I was in college, let’s say. But it’s such a beautifully intimate thing to take care of your child like that. And not that I miss changing diapers, you know, but I mean, those moments are different now. But in a time when you maybe I couldn’t have some of the intimate moments I have now with my children when they’re older. Those were the those were the moments I had with with them when they were younger and and I look back and there’s so meaningful moments,
29:10
what grade is Elliot in?
29:13
So she just finished DK the developmental kindergarten and so she’ll be going into kindergarten in the fall. And our school districts because she has a June birthday, so she was kind of borderline so she got an extra year of ECSC. So early childhood special education because of where her birth date fell, which put her like, slightly behind as far as her age goes with her peers, but she she absolutely loved DK she has her two best friends that were in the in her class that every day she’ll come home and she’s nonverbal, but she has some signs. And so every day she’ll come home and she’ll be like Kinsley London and those are her best friends that she’ll she’ll babble about whatever They did that day. And we’re just like, This is great. But we don’t know what she did. But it’s great. You’re so excited. And we’re so excited to share this moment with you like, and, and just because it feels like, it’s such a proud moment for her. Which makes it even more like such a gift for us to enjoy that. Even though we don’t know what she’s saying, if that makes sense.
30:23
Yeah, totally. We just can’t we just keep videos.
30:25
And yeah, my art. We have them all on our phone. And they were all these videos of Liam doing the same thing where like, some of his words were intelligible because he was he was singing Mallanna next to his sister. And it was all of these like, beautiful sounds and just like watching him sing. And I think he was about the same age about seven when Moana was out. But
30:49
it was Frozen. No.
30:53
It’s not frozen water. It was regular water. Yeah.
30:56
I think that that’s about right. Yeah. And he was kind of signing to a little bit
31:00
he was and what it reminds me of, as you’re saying it, and you know, and when you say and she’s still in diapers, and I wouldn’t have imagined that. I remember as a parent of Liam, and he wore pull ups to kindergarten, and he wore pull ups, I think. And we worked on the potty training, and we didn’t push him. I just remember in first grade saying, okay, Liam, we’re gonna wear underwear today. And whatever happens happens. And every everybody like our daughter was allowed to have accidents. And I feel like we were striving to a point that like, like accidents, like, you had to be perfect what he had to be perfect. And, and when he was finally ready, whatever age that is. And we said, Alright, this is what we’re going to do. And let’s just see how it works. And we told because what happened was because he had pull ups on, the teacher saw that as a, we don’t have to take you to the bathroom. Yeah. And he comes come with him or ask him if he has to use the bathroom. So he’d come home with like a really full pull up. And very quickly, we were like, we’re not going to do that we’re gonna, we’re not going to do that to our child.
32:14
And I remember when you said, you know, let’s put your couple
32:17
pair of underwear in the bag, and just like you do for every kid
32:21
and go to school, and then everyone was on board. And they just asked him maybe the first day they asked him many times during the day, do you need to go? Do you need to go like after each little thing, they’re doing a school. And he made it through the day. I mean, it was like, going, Oh, I don’t know if he’s gonna ride the bike. And then you get on a bike and you start pushing and he rides. You know, it’s like it just it taught me such a lesson about raising the bar. You know, like, how I can do that more even for myself.
32:49
I look at those videos now. And I’m like, all man, that was so amazing. And I feel like I robbed myself of the joy that was there a lot of time. Because time. Yeah, at the time, I really did. Because there was this, this judgment of not what he was able to do. But what it meant if he failed, what it meant, if there was an accident at a time when all kids have those accidents, right? It just, it was a little bit heavier. And I looked back at the times when he was like when he was doing the babbling and then saying some words, but he was signing. And it really took us until maybe maybe his IEP in third grade when they were always trying to tell us what he couldn’t do that I said, My son has learned a second language to communicate with you. Like he has his first language, you don’t understand it, because you’re not you. But the teachers like they dismissed it as babbling. I’m like, Oh, he’s communicating. He is talking Look at his face. Look at his like, he has this he works at a higher level of intelligence. And that’s not what it’s looked at. But he’s definitely working at a higher level of intelligence that he’s, oh, I understand that. You don’t know what I’m saying. Now I’m going to learn sign language. And I’m also going to gesture so maybe if you don’t know sign language, but and get animated. Yeah. So it took like it like every day, he’d leave first grade. And he would tell his teacher, thank you for being my teacher. And they the teacher never even learned how to sign back to him. And it was just like, it took me a long time to just go you’re the adult. So that’s your choice, but don’t try to limit my son when he’s clearly able. But there are some things that have to come into play before you can see his ability. And that it and that honestly is something that’s been becoming more and more concrete in our lives and our understanding of our child. And mostly because society doesn’t understand And, and it took us a really long time to get to the place where we stopped trying to prove to other people. I don’t know if you’re there yet, but it took us. It took us a really long time to just be like, You know what, I don’t have to prove to anyone what he’s able to do. And Liam gets bleak because, because I don’t like it as an adult when I have to prove who I am or what I can, you know, we don’t Yeah, we do it a few times. Like if we’re interviewing for a job, or if there’s certain like, people need to know if they can, you know, if we can do something, but I mean, any any adult would be miserable going through their life always proving themselves it’s not a burden that should be placed on our on our children.
35:43
Yeah, agreed. Ellie has a lucky she’s. She’s a bit of a mini celebrity in her school. When she’s out for doctor’s appointments, things like that. All of her classmates are asking where she is. And she loves going to the principal’s office. She’s like buddies with him. And it’s just so funny hearing some of these stories. And like, that’s, that’s so that’s so who she is. She’s just a bundle of joy most of the time. I mean, if you ask my wife right now, she’s not very happy with her. She’s not not very big mom mood. She’s more than a dad mood. So whenever I’m around, it’s like, Oh, I love you come here, give me hugs and mom. That’s she’s great.
36:34
That’s a milestone. You know, we have a teenage girl and his parents. Were just figuring it out. Like, all the time, it doesn’t matter, like a parent of any child. I mean, the truth that I actually share with my daughter is that I’m doing my very best, and I might get things wrong. But that is great. Because then you have the opportunity to get it right. When you’re a parent. Oh, for her, you can get it right. But and just learn from my mistake up teach you how not to do it. Right. Yeah. And one of the videos and I just say this, because like, I think this just to share from you know, Liam 13. But we just saw this video of a speaker doing commencement speech for what college? Is it?
37:20
Oh, it’s in northwestern Illinois. Yeah. And he talks about Governor of Illinois.
37:24
It’s really beautiful. We’ll put a link to it. And can we put a link to it before? I promise a link? Maybe? Maybe? Yeah, probably. But it’s really, you know, it’s really beautiful, because he talks about kindness. And he talks about it as being evolution, and that that is a higher mind. And I think that’s my new standpoint on my son, because my son is one of the kindest people. You know, he’s, he’s a human. But he doesn’t he’s not malicious. He’s, he’s never unkind with an agenda. Like he might do stuff that we don’t want him to do. And that’s every child. But he’s kind and empathetic. And this, the speaker at the commencement speech, talks about how this is a higher intelligence, it’s evolution, like, it’s evolution, like coming from a higher mind. Yeah, our
38:14
like, animal brain is just judgmental, and maybe standoffish from people that are different, or things that are different. And we’ve developed empathy and kindness, as in evolution. And so it’s easy to go. The other way to be kind takes the evolution and effort. And so he ends it with most often that he’s seen is that people that are kind are the smartest people in the room. And I was just like,
38:38
I’ll leave the room. And I’ll strive to be the smartest person in the room. And, you know, because you’re at seven, and I know that’s a lot. And I’m so glad that she’s a celebrity in her school. And that brings me such joy because I feel like kids, I feel like kids get it. Yeah, you know, kids get it. And it makes me also happy because you’re coming through. She was born six years after Liam was born and just hearing that we are making steps we are we are making progress. For families that are coming behind us there. You’re having a different experience than we did and that that is really beautiful. And then you’re changing the experience for people who are coming behind you. Yeah,
39:26
no change in the future.
39:28
That’s important. Ellie at school with with her, her peers. There’s a group of girls in her grade. They’re all younger than her. But the teachers call them the moms squad. Because they’ve just kind of taken her under their wing and like they’ll help her with things and make sure that she has what she needs. She’s keeping up it’s really really cute. And those are her best friends and like so the moms squad. That’s a really
39:55
lovely Yeah,
39:56
it’s amazing. We should
39:57
all help each other that way, you know, yeah.
40:00
I know it sounds like she’s in an inclusive classroom. Yes, yes. I mean, I think whatever is best for every family, that is what is best for every family. But as far as inclusion goes, you know, it’s not just for our kids, you know, their benefit, the benefits to our children being in an inclusive classroom are the basic benefits of being included and feeling of belonging, and not being segregated, which is the opposite. And nothing ever comes good from that. But the benefits to society and the rest of the kids in that classroom, exceed on a different level, it gives them the gifts of that higher intelligence, of empathy, of kindness. And, you know, especially like, I was so surprised when our daughter went to kindergarten and kids are already developing that, like, there were already a group of mean girls in her kindergarten in her kindergarten class. And if that is changed, if that that journey has changed, for everybody in Ellie’s class, and for that group of girls like what, you know, like, I like superhero movies, and the whole like, are everything, I’ll be a little bit more hyper i Everything, all, everything everywhere, all at once where you see like, the different paths people’s lives can take from any decision and that decision of having Elliott in the class, and what did it do to that mom group, what did what has it done for their future and for their lives and everyone in that class as as you go, and then even further society, and even further, because every parent that we’ve really talked to who’s had a child with Down syndrome, the benefit to their life, the improvement to their life is exponential.
41:47
We’ve always said that for as much as Liam will use his inclusive classroom as a way to model off of other kids, which we’ve said to there’s like, plenty of reasons not to model off of typical sixth grade or whatever grade he is going to be seventh grade now. But Liam’s an asset in the classroom, Liam’s teaching those kids things, just by them observing how he treats people, how he acts,
42:14
what about not to judge a book by its cover, right, because you know, kids going into it, they probably don’t expect, what they actually end up experiencing with Liam in the classroom, which is Liam’s ability, Liam’s ability to do the work, Liam’s ability to be there and participate. And, like they’re not expecting that, because that’s not what they’ve been told. And so this
42:36
whole inclusive experience, is building a better future for everyone.
42:40
Yeah. Our fear is always are her peers going to accept her? Are her peers going to play with her? Are they going to understand her? Are they? Like, you know, you have those moments where it’s like, oh, my gosh, is she ever gonna have like a sleepover experience? Is she gonna ever and you, you grieve for that, but then it’s also like, but she’s gonna have her own unique, incredible experiences, that will be better than whatever we had. That’s the goal. And that’s what we’re trying to create.
43:14
She’s gonna have those experiences and more, you know, it just, it’s gonna happen, but it’s just gonna happen. Well, I
43:21
think those are the fears of every child, like, will they have friends? Will they, you know, that’s with me, it doesn’t, it doesn’t matter how many chromosomes that they have. Right? But do you feel it? Because what I feel like is on this journey, that I may have had those same concerns for my daughter. And then, you know, maybe I’d be with another mom. And they’d be like, oh, yeah, that’s and you’re taught not to compare your kids at all. And so it’s like, alright, well, we’ll just see. But then with Liam, it just has a different weight. Right? And I just want that not to exist. Yeah. I just want that not to exist, like, I want. I want parents to not worry when their child is born, if their child is going to get married. Or if they’re, you know, like, I know plenty of adults that have opted not to be married and it doesn’t they don’t have enough plenty of adults. It doesn’t have that aren’t married. Yeah. So it’s like, I just, it will be nice when parents don’t have to carry that around as if it’s something extraordinary and a concern that is only theirs to carry because their child has a chromosome because it’s what every parent wants for every child. Right? And it would be nice if parents on our journey in this community could have a little bit of lightness, which goes right into your retreat that they can your retreats to have a little bit of respite and
44:49
share information if they want.
44:51
Yeah, and I think that’s so important and the advice that I would give to any new parent would be find a support group find Like whether it’s a local community or if it’s DSDN, it doesn’t matter, like find people who are in the same ish out, right? Because that will be huge for, for everything. Moving forward, it’s been huge for us, it’s been huge for everyone I’ve talked to just to have those peers to talk to and bounce questions off of ideas. Like, it’s, it’s really impactful.
45:28
I think it helps us fill our bucket. So that then we can we as parents can exist in an inclusive society. Like we we can develop empathy, for people who don’t understand, yeah, you know, we can develop that patience, when we get comments or questions, so that we can handle them better. I know, as a, as a mom of a child with Down syndrome, like, I always felt like I had like, just like Liam was held to a different bar in his classroom, I didn’t allow myself the all of my emotions, because I knew that it would be possibly viewed as something else. I knew that it would be attributed to something else. And, and I think it’s really great that you’re offering parents this, this respite, where we can, it’s not where we can just, you know, heal a little bit of time to heal, so we can go back out and, and be strong again, because the truth of the matter is, this journey can can beat you up sometimes. And I think really those those initial years until you find your footing until you’re clear on. I don’t know, like for me, I just took a breath and saw my child, but I gotta admit, he was like, nine, before I could pull out of all the other things that were coming my way. You know, all the other concerns, the therapies, the fighting, fires, education, all of that. And, and when I could do that, it was free. And I felt like it changed the dynamic in our house, I think it changed just all around how I even functioned in the world, like I was going out, like, we’d go out like we were putting on this armor every day in the world. And we don’t have to do that we don’t. And I think it’s really wonderful that you’re offering that and that this community now, has these resources available. Yeah. Now, thank you, thank you for changing the journey for parents that are coming behind.
47:31
I mean, I love the organization. They’re doing a lot of really good things. But it takes it takes a village, you know, and so I’ll throw one last thing out there. So I don’t know if you’re going to the National Down Syndrome Congress in Orlando. But we will have a booth there as well. Um, if people want to learn more about the DSDN, I’ll be there volunteering. So it’s July 19 20th, and 21st, I think. So we’ll have a booth there. And then we are also hosting Thursday night, like new parents sharing sessions. So I’ll be hosting a dad session for dads with a child zero to three. And then we’ll have a moms one, zero to three and a moms four plus. So just an opportunity for parents to come together. Chat, talk about things. There’s no set agenda, just an opportunity to share.
48:23
And is it only in person or will there be zoom accessibility as well in person? Okay,
48:28
so if people are going to come say hi.
48:33
Wonderful. I’m so happy that we got to meet you today.
48:36
Yeah, thank you, Ben, for joining us today. It’s been really great.
48:39
Talking to you. Thanks for Thanks for doing the podcast. This is awesome.
48:44
Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.
If We Knew Then - A Down Syndrome Advocacy Podcast 