Transcript
Hello and welcome to the If We Knew Then podcast. I’m Stephen Saux.
And I’m Lori Saux. And today we’re joined by Johan Lindborg from t21 Coffee.
I always enjoy meeting new friends and hearing stories, because they’re so important. This was a beautiful way to begin our day. I’m so thankful for Johan’s openness and honesty to discuss what his path has been in this conversation about the journey of having a child with Down Syndrome and sometimes not being able to find that that word for how amazing this path is. Johan’s Coffee Company, T2, benefits Down syndrome research. There’s a dark roast and a and a medium roast and it’s wonderful. This conversation is the culmination of some of my favorite parts of life. My child’s extra chromosome and coffee.
So welcome Johan.
1:35
Good morning. Well, it’s really nice to meet you today. Yeah,
Stephen, how did you find out about the T 21 Coffee?
I saw t21Coffee on Twitter and we’ve been following you guys for a little while. I really liked what you do and your posts and the concept and just wanted to hear more and invite you on and you were so gracious to come on.
Well, thank you. I’m glad you liked it. Okay. Do you drink guys drink coffee? I hope you get the opportunity to try it.
We will get an opportunity to try it. We will. Yes, we are coffee drinkers. Awesome. Do you want to tell us a little bit about yourself?
Sure. I moved to United States in 2001 and was born a Swede. And I was working for an American company in Stockholm, Sweden and went on a business trip in 1998 to Paris of all places. And while taking my customers around on a guided tour on the Royal Palace of Versailles, I met a very beautiful woman. Her name is Stacy and she became my wife. And she worked for the same company but at the main office in Indianapolis, Indiana. So we dated across the Atlantic for a little while and then we figured out well this is getting too serious. So one of us have to move. And I moved over to the states in 2001 March April and I’ve been working in the pharmaceutical business for many years and we had our first daughter in 2007 and then we had our son Cooper in 2011 and with our first pregnancy you know take a test to see if everything’s okay and that was a certain elevated risk for Down syndrome from the first one but we we never acted on that so we turned out to be complete normal pregnancy and everything was fine we got our daughter Emma was delivered
3:35
for Cooper we’re never the same signal errors might be an elevated risk but we’re not going to do anything differently so we didn’t find anything else out and maybe being male I said well what happened last time it won’t be fine was trying to though when he was born and having Down Syndrome I was
3:58
it was tough and I went into a pretty dark hole, not that I showed it so much outside but
4:13
We always stupid thoughts in our head and one of the things that I really wish I … it may be natural but I’m quite shameful…when you upgrade to new iPhone, it brings over all your stuff. So over the notes you have from way back when it’s still in your iPhone. So after the diagnosis as I was coming home, I was having a lot of questions in my mind and I wrote them down and many years later I opened that up and looked at that.
4:55
Boy, it was tough. Because I realized how how bad I was feeling. And I didn’t have anyone to really talk about that. One of the things that really disturbs me the most is that I wrote down. What will life be? Which is not hard, but will I be able to love my son?
5:41
As a, as a father how can you write something like that?
5:48
Today that doesn’t enter my head.
5:55
I guess I’m grateful.
5:59
If you’ve seen the logo for our coffee brand, t21 Coffee, it’s a black background, which, of course symbolizes coffee.
6:11
But it also symbolizes that dark dark hole. There’s nothing more precious in my life than the kids and to be able to write will I be able to love my son, that’s, that’s truly it’s heartbreaking. It’s not a word I use quite often. But for me that is. And if I would forward a little bit to where I am today, we’re Cooper is just turned 12. Last week, Fortunately, I’m in a different place.
6:54
I came up with the logo, the first direction to my graphic design was to have a silver lining over with because for me, it was a dark beginning. But boy is a silver lining. And the graphic designer, put a box around it in silver instead of a silver lining, it’s a silver box. And I was live “Agh”.
7:29
There is a golden rule to not argue too much with your graphic designer, they are pretty smart. So I was thinking about it and Yeah, that works for me. I mean, I’m completely surrounded by him, His love and his personality. And people that cares for me as a community that cares very deeply about him and it fits perfectly to me.
8:02
Cooper is is a fun guy, and he is basically nonverbal. I have a little bit of a magical connection to him. So if I say something, I will do it. Or he will say a word but otherwise other people. It’s hard. He’s very good at communicating otherwise by using signs or he has an iPad, which we call this talker, which he can write on and so he’s he can communicate. But he is he’s a very special guy, but man, he’s always happy. He can really tenderize your heart to degree which is you can’t communicate that you have something else to see for yourself. He just graduated fifth grade and this main special education teacher came up and he started crying as walked away. He couldn’t stay there and talk about not seeing him next year.
9:12
And he has an impact on on people. When you start to wonder, what kind of purpose do you have in life? Maybe his his purpose in life is to make ours our people’s heart more tender? I don’t know.
9:33
Well, the world could use a lot of that.
Yeah, you’re right about that.
Johan, thank you for your honesty, and trusting us with your feelings. I really appreciate that. I don’t feel like there’s room for shame. There’s no need to feel shame because I know that there’s there’s so much unknown I don’t I don’t know what you knew about Down syndrome before Cooper was born. We didn’t know anything.
10:03
A lot less then I know now.
10:05
And all we actually knew were the negatives that came our way. So it’s really hard not to have fear in that moment. And, and lots of lots of feelings. And that’s really why we started this podcast because we didn’t want I mean, Cooper is 12, Liam, is 13. We didn’t want anyone to feel how we felt. And we wanted to put messages out there that were, you know, positive and filled with hope. And actually, what we feel is the actual journey of having a child with Down syndrome. None of the things really that we were told in the NICU and, you know, by society have actually come to fruition. And but I think it’s absolutely 100% like a natural feeling to have just about anything in our life, to have fears when we’re dealing with the unknown, and when the unknown has this foundation of, of negative, you know, so thank you for being thank you for sharing that. Because I don’t think that you’re the only one who has felt that before. And when you received the diagnosis, if you were given a snapshot to your life today, you might not have had those feelings, you’d still maybe be curious how you got here, or, or what it actually meant. But I don’t think that we’re given the information to help support our child when they’re born with an extra chromosome. I think we’re given a lot of hogwash.
Yeah, so, I think so for many. For us, they sent in another physician at the hospital, who had a kid with Down syndrome, who was very good and thought through a little bit, how he was seeing it, and He’s liking. But that’s also a situation where it’s very hard to process, it’s gonna be you need to go through it. So it’s a dramatic, acute situation, I think you need to, and that varies from person to person, I think you need to take the dark emotions, you need to ride them through a little bit before you able to really listen. I mean, he said a lot of things that I probably didn’t listen too much to. He said a couple of things that I didn’t remember. And they turned out to be true. I mean, he, he talked about that. Yeah, your kid will hit milestones a bit later than ours. But they’re still milestones, and you’ll be just as happy to see him develop. And, and I think that is one of the key
12:49
questions or things that you need to realize and to really get feel comfortable with your with yourself and your kid with Down syndrome is, yeah, they’re a little different, sometimes very different. And that were still successes, and you need to learn what they are in a different time schedule, and you need to adapt that you can have them adapt to your time schedule. When you can get around to do that. You will you will have fun. Here has an older sister, right? Correct. Yes, I feel like it’s it’s so funny how I think with our daughter, you know, she hit her milestones. And we never, I don’t think we ever really stressed if any of them came late. And I feel like you know, like with Liam, there was this pressure of, you know, we knew when it was supposed to happen, and really should be doing and really working to get to that spot. And I think that what I have learned is, one, I enjoyed his milestones so much more, because I was actually able to really see them unfold and have an appreciation of what we we all go through as humans to develop like the, you know, what it takes for us to walk what it takes for us to feed ourselves like, those are all miracles that we should celebrate in our lives, like all of our lives. And with Liam I could just see like everything that it takes the you know, all the effort, the effort, but also the words that I didn’t have when Sophia was developing the all the technical definitions of you know, fine motor, gross motor, just all of these things that I learned along the way and that was something that helps me now to be able to say I want to put the same foundation as I do the same structure, as I do for Sophia, but just as much as I do for Sophia. Allow him to find his way there with the supports that he needs. Like how can I support him to get there? Is that really where he wants to go?
15:00
Yes, and that adaptation is so key. And I, I find it
15:06
interesting when I track along on different forums or downstream them as is debated, for instance, on Facebook and other places, and there’s a lot of people Oh, my son will data with Downs hasn’t hit this milestone yet. When did you real kid hit your milestone? And I never reply to that I always think that’s the wrong way of thinking about it. It’s not going to make you happy. Don’t compare your your kid to a typical timeline, or even to another downside from time to time. And because there’s a huge variation within the Down Syndrome Community when different individuals do different things. And I just don’t see the benefit of that. It’s so much more important, as you say, to adapt to your kid and see, what can I do to help them? And do they want to go there? That’s the key. Yeah, I think that that could be even parlayed into our typical daughter to like, comparing her to other pieces. That’s what we were told, we were told from day one, don’t compare her to other kids. Yeah. That’s the thing. The doctor, the pediatrician, the teachers got her own time, right? Yeah, that’s something that we are actually given that we’re, you know, we were given that with our neurotypical daughter, but what, but why is it we just I think, because there’s not, you know, with Liam, I felt the the, there’s fear there, like, Is this ever gonna happen? A fear that doesn’t I don’t fear that with my daughter, and I don’t know why. But there’s, there’s a there’s a fear there. And then there’s that? Does it happen? Because we’re taught because I think, I don’t know if you were given a list, but we were given a list of all these things that he would never do. And I’ve had teachers say, you know, say to me, Well, he’s just here for socialization. Correct. And I was like, he’s, he, I can take him to Disneyland for socialization. But we compare.
17:06
I know that when I’ve compared in the past, when I’ve asked the question, will he do this? And I think you’re right, I think it doesn’t get I think once we get to a place where we’re seeing him accomplish things, and we’re in that, in that place of being with Liam, when we finally got to that place, I can say that all those questions before came from fear of not when, but if, and needing to hear that someone else has or can. And, and we’ve been very fortunate to hear so many of those stories. And that helps a lot that because you can see that everybody, you’re on your own path. Johanne Ray, everybody’s on their own path. Yeah, we can all you know, do things. Maybe I do it quicker than someone else or slower than someone else. But Liam shown us that he ends up doing it. Maybe in a different timeline. Yeah. In his time, right. Yeah. Yeah. I was wondering the other questions. Do you remember any of the other questions that you wrote down? Or do you feel okay, if you do remember them? sharing them? No, I think that was, that was one that stood out when I’m going through it.
18:23
A lot about questions about how would life be when there’s a lot of fear, which is natural.
18:31
Now, it’s interesting, what kind of support you get in schools. I mean, we have a very good school over here in Massachusetts. They’ve been very supportive and he’s been getting a lot of resources. He’s is a funny guy. You know, I’m from Sweden. My wife is from Texas. So he’s half cowboy, half Viking. Do you think he’s stubborn? Oh, boy.
19:01
He had one speech therapist that he didn’t really agree with that much. So they had two or three lessons a week at least them. One of them she had decided to ease he was going to say a specific word. And he wanted to do that. So he came in and she started Yes, went to the corner of a room and stood and stared into the corner for 30 minutes until the last one was over. He was not gonna give her a victory. That’s communicating, isn’t it? Yes. It’s a one way of communicating. It’s my way not your way. Liam does that similar thing where he’ll like he wants to go see a movie let’s say and he’ll just
19:46
Monday morning he’ll talk about that movie that we’re gonna go see you on Friday ends every day going, we’re gonna go we’re gonna go right we’re gonna go and I’m like, Man, I should use this in my life. No, I learned a lot from saying what I want. That’s one thing that it’s actually our whole family is like because everything that he he’ll say
20:00
he’ll say, you know, whether it like at the beginning of summer it was he wanted to see the Transformers movie or for his birthday, he started I want to go to Disneyland for my birthday, which is in February, and I’m like, it’s in February. But wow. So first I was just like, well, that’s in February. And then he, he would say, Alright, can we go to Disneyland for my birthday, and then now I’m to the point of, okay, so I will start now planning, like, and he’s made it, he’s made it happen. And it really does. In all seriousness, it really gives me insight into how to think how to make things unfold in my own life. It’s that persistence, you know, because when you see it, that he really, I can’t think of anything that he’s ever wanted, that he hasn’t made it happen and, and all of us joke about, like, we really need to adopt the way that he just knows what he wants, and then goes after it. And with blinders on. There’s like, he’s just gonna do it. Before Liam was it, like, his verbal communication, his expressive communication was really coming in it did, it took me a while, because we would say he’s, he’s non expressive, or his other pathways are stronger than his expressive pathways. But it took me a while to realize, no, he’s expressing, I just have to listen to that. And I remember we had a speech therapist. And first of all, with therapies, you really just have to go until you find the one that not only works, it should what works with your your child like that, that is something that I really do. And then they have to really jive with the whole family if they’re going to be in your home. But one time, I remember listening, and I think it was might have been over zoom, because that was the only reason I was in there.
21:41
And they were given Liam a lot of guff for not doing what they were saying to do. And I realized nobody was listening to him, like they had their agenda, that they they had what they wanted him to do. But Liam’s a human, not a show monkey. There are certain things and why doesn’t Is it because that sound is hard for him? Is it because you know what, he doesn’t trust you. And try to get me to do something for someone I don’t trust it’s you know, I’m I have different ways to cope with people I don’t trust. But I feel like there’s like this, this veil that’s removed from Liam, where he’s not gonna be dishonest. Liam is a really good judge of character. And if there’s ever anyone that he’s just like, right, when he meets, we’re cautious as well, because he’s, you know, he sees the best in most people. And if there’s ever any one where he’s just like, then we trust him. But I did notice that when he was doing different therapies that I had to step in and say, Are we listening to him? One? Is he doing what we’re asking? And we’re just not picking up how he’s doing it? He might not be doing it the way you want him to do it. But he’s doing it his way? Or maybe that’s the he needs help getting there. Yeah, it’s it’s very interesting, what you’re saying. I mean, some of these things I do notice with Cooper as well, I mean, one trick with Cooper is you need absolutely 100% to connect to him emotionally. Before you can get something else going through me, you need to look him in very, I need to smile. And there’s got to be if you don’t do that, he won’t. You don’t pay attention to you whatsoever, you can do what you want, he won’t care. You absolutely need to get that emotional connection.
23:26
And if he trusts you, he will, he will invite you and communicate to the degree that he can. But if you don’t do that, he will turn around, they can get us there in the corner for 30 minutes deals to get rid of you.
23:41
It’s like Cooper’s teaching us manners. You know what, there’s so many times in the IEP meetings at school, where were the teachers saying, he’s very, very clever in teaching us what to do.
Oh, you sound it sounds like you have an amazing school that had an IEP, meaning you’d get that feedback. Yeah, just right. When you said that. And you said he’d rather if he doesn’t, if you don’t make that emotional connection, I was like, couldn’t we all use that when we’re talking to people, if we have like a connection, instead of talking? I don’t think we talk at them. And I think we’d be better listeners. And then if he goes and stands in the corner, that’s like classic meditation, like to go stare. It’s like, I mean, and those are just like, as you’re saying it and like, those are two great lessons. And one of the challenges I’ve had with, you know, my son’s journey is that people will view who he is, or what he does as less than or with some kind of some kind of prejudice or like preconceived notion of what it means. And I really feel like the M is the teacher Liam’s got it right. You know, the, the way he talks to people he stands his ground and he can be stubborn and there is room
25:00
There now that of course, he’s a teenager. And so there’s so many other things going on that we have to like touch base and give him guidance, like, you know, like you do for every teenager. But I feel like that gets discounted sometimes, you know, he stubborn, but the reason he’s stubborn I see for the most part is because he gets away with a lot of things, people will allow him to do things if he if he asked three times, or if he rejects what they want to do two, three times. Okay, Liam, because? Because he’s so he smiles, like, oh, he was like a magician. He’s like, you know, and then they’re like, Oh, he’s just because they kind of go, Oh, he’s so sweet and listening. But you have to have boundaries, you have to, you know, have rules. And and if you make sure that Liam follows the certain rules, then he goes, and does it. But I’m trying to push, push, and then somebody goes, Ah, all right, well, I’ll keep doing that, too. If I can, if I can get away with it. No, that is, that should be eye opening for so many people who have kids with Down syndrome, in my opinion,
26:04
there is such a fear. To me. Maybe it goes on culture to different because I’m gonna Sweden, I don’t know why. But I’ve asked to me there’s such a fear from teachers, teacher community to put boundaries or put a bar or really don’t back down when you want something. And if you don’t do that to Cooper, he’ll walk right over you. But if you do put down a boundary, and he learns rules, then that’s it. So basically, he’s a little bit more open now. But for a long time, the last three years, if you want him to do something, if I said it, you would do it. If someone else, including my wife said something he was like, No, we just wouldn’t do it. But he knew if I said something, it was going to happen, whether he liked it or not. And he said, Yes, the grave. That’s fine. I think I feel like that would go back. If we went back three years, that was when, like, Liam was around 10, eight to 10, that he was very, I think he dug his heels in a little bit more, as well. And it would, and it was definitely would depend on how people spoke to him. There was a point where I just started to try to understand where he was coming from, like, what it would feel like to be told so much about you’re on a constant more than most kids told about their ability, like, you know, going to all of these services, doing all of these things, and establishing your voice and your power is a milestone in kids. And that’s what I was seeing as Liam finally realized, Hey, I’m not just on this ride, I am this ride. And so I have some say, and if I could go back, I just remember this one time where it was kindergarten. And you know, you’re not supposed to hug and but everybody wanted to hug Liam all the kids always wanted to hug Liam. And then when Liam would hug back, they’d be like, Liam, hug today. And our first question we learned to say, who was hugging him? Why tell us about the situation? Well, you know, first, so and so came up and asked him for a hug. And then, but then he got to like any any, and one of the kids fell. And we were like, Well, that just sounds like a bunch of people hugged and lost their balance, and their kids. So they’re, what’s wrong with it? Well, he got in trouble. And he refused to apologize. And when I looked back at it, and I remember, but they were on him all day, are you going to apologize, and he was just like, No. And he but he didn’t have the if he didn’t have the words to express, he probably didn’t feel like he did anything wrong. And nobody else probably apologized. And that gets discounted. And I feel like for so much of his life, he was upon, you know, he was told what to do or what to feel, or how to respond in a way that it wasn’t a bar that the other kids were held to. And we went in the third grade right before the pandemic, to, you know, where you could come in, and it was someone’s birthday. And you could bring like a treat, and, you know, they sing. And I just remember, and it was for Liam. And I just remember when all the kids were allowed to like run outside because we set up the treat. All these kids were like running and screaming and just like going to where like the apparatus things are and like bonds scaring each other and all of this, like wild, uncontrollable behavior. And Liam walked out with his aide, and he sat at the table with all of his like, because that’s what he had to do. Like he didn’t have that same. He wasn’t given that same breath to be a nine year old. And that was when Stephen and I entered our IEP is really, you know, he’s just as great of a model in a classroom, as whatever you’re wanting him to model from the other students. He’s an asset in the classroom.
30:00
He shows the kids things just as much as they show him. That’s, that’s great to hear. It comes across some also sometimes how smart they can be. And Cooper loves to be funny. So this first speech therapist that he didn’t agree with so well she had made a decision that he’s going to say yes, or not during a 30 minute session. And she tried all different things by reading a book. And he said other words, and she tried to make him say yes, and you wouldn’t do it. Hold on hold, couldn’t get him to do then in the next class, he was thinking, I’m gonna see if I can make him say yes to. So she’s set up a question. So he would have to answer yes. And he answered, okay, instead of just looked at her and smile,
30:49
knowing fully well, but she had set him up and, and knowing full well that he was not going to fall into that trap. And that’s something else.
30:59
Very smart. Yeah, it’s brilliant. I mean, did she ever ask him why he didn’t want to say yes. Or is it this, you know,
31:07
basically nonverbal, so it’s hard, you don’t have longer conversations with me, you get one or two words out of him. And these talk or you can write sentences, but it’s, you don’t really have a extended conversation. I feel like that is a standard conversation. I feel like that was so much as was said, in in that silence. And then in the fact that, that he remembered what her agenda was, and was still going to stand his ground. I feel like that’s such a beauty option he took, I mean, to take an option, you have to know what what right, you have to you have to know and that that’s what I was talking about. Like when I finally I don’t know how old Liam was. But I remember I think I had the epiphany actually, once we had started this podcast, where I actually like, saw him and I was like, Oh, my gosh, yes. And I just remember going, you know, like in that situation that you had with Cooper. When I was receiving questions, mostly for education, I try not to like, I’ve tried to get to a place with society where I don’t have to fight to prove where my son is. And it’s not my business what other people think. But in IEPs, they would tell us, they were telling us that he’s not. What is it comprehensive? He doesn’t comprehend are these things that he couldn’t do? This was his old school, they’d always tell us all the things he couldn’t. And I would start to find things in his day that were like, bow, if he can do this, this, isn’t that an example of it? So yes, that’s he is doing it, we just have to choose to get off of our perception of what we think it looks like, and allow it to present itself in everybody, the way it presents themself. We’re not all the same. Absolutely not. And that way, as you know, our dear kids can also be a challenge. I mean, as a school, they try to bring him into the typical class as much as possible. And last AP, we had they said, Well, I think we need to take them out of science class. And I said, Okay, why is that? Well, every science science class he attends, he turns around and falls asleep.
33:14
Okay, I’m gonna argue that one.
33:19
Obviously, science doesn’t interest us in whatsoever. And he is a master of falling asleep twice, he has been known as falling asleep on a rock on a moving horse. Wow. So when he decides something he decides,
33:33
but I agree with you, the focus should not be on what they can do. The focus should be what can they do? And what steps can we take from there? And that’s one of the key things that I do in my company Teach One to One coffee. So we have two goals to benefit the downside of humanity. One is that we, we bank cough, and we sell we give $1 away to Down Syndrome organizations. So we get away currently to Massachusetts downzoning Congress, which is a very active organization and is very powerful. Secondly, we tried to hire as many people as we can with Down syndrome. And the principle there is, I tried to look at what can they do? What are we good at? And how what can they then do in our company. So three young adults helping me out with Down Syndrome and one of them Felicia, She is an actress. He has been in several movies. She has been on movie and Netflix and she’s very happy to be in front of a camera and is extremely horrible. So he’s like the best person I ever met with Down syndrome in terms of her ability to speak and communicate. So moving some video clips of our wish you do does promotions and we put them up on social media. That’s what she does best. She can do that for me.
34:59
We had
35:00
A in a town where we live in Lexington, Massachusetts, we had a, let’s call it a discovery day a couple of weeks ago where they shut down downtown, the company’s very metallic and put out there and make little booths and people doing walk around and discover what kind of stuff we have in town. And we had a booth at t 21. And Samantha helped out a young woman with Down syndrome. And he was fantastic. In organizing things she has been studying in college, she’s most great at setting up the stand and organizing the merchandise and making a nice presentation. And she was fantastic to work with every person who came up. When we were handing out free coffees, you would go, Hey, my name is Samantha. It’s cold, I have Down Syndrome and she was talking away every person that she was fantastic. So the focus should be on what do they do? Good? And how can I employ that? And that’s the way it should be? You know, think about it that goes for us in life too. If you run a football team in NFL and if you have Tom Brady, as a quarterback, are you going to tell him to run the ball? You’re gonna tell him to throw it? You know anything about football? You’re not going to tell Tom Brady to run the ball. He’s gonna pass. Yeah, it’s such a simple thing, right, that we that we kind of do for most people. But I just think that people would see leaps and bounds? Absolutely. If you looked and you said, What does my child do? What do they like? And how do I support that? Like, I’m not going to, you know, ask them to do something that they don’t enjoy. That’s such a mindset shift that that could happen societally and scholastically in every area, focus on, let me focus on your strengths. And let me let me really nurture that
36:53
now, and it’s so wise to focus on your key strengths and play to your strengths and make them even stronger. But maybe the point here is also to keep your eye open for new strengths. You don’t know what he can do. If you haven’t tried hard enough yet, in some some areas. How did you come up with the concept of t 21? Coffee? Well, I mean, as a parent, I think you you always think of your kids think ahead a little bit and think, Okay, what are they going to do in life? How are you going to fit in?
37:31
I think that’s a normal thought that all parents have. If you have a kid with special needs, I think you might think about that a little bit more often. So I was thinking about I mean, what will his functional level be when he’s older? Can he do a job? What kind of job will there be an openness for someone to give him a job that can focus on what he can do whatever whatever level that will be, which I don’t know what that will be. And the more I thought about it, I can say, well, I have two choices, I can either wait and see what happens, or I can do something about it. So I chose to do something about it. So I wanted to talk to my wife. So I wanted to start a company where we tried to benefit the downside of humanity. And she thought that was a great idea. We thought about it for a while. And we ended up with a coffee business, it fit in what we wanted to do very well, we need to put in a lot of capital investment and beginning I founded, it has different legs. So right now it’s an online business, where there are certain types of jobs that I can offer to people with Down syndrome. If it takes off, and there is a steady revenue stream, I can see that we could start right now we are partnering with a local grocer who rose for us, we could expand and we can open up our own rows three and rows ourselves, which would provide more work opportunities. Or we could expand the other way. And we can open up a coffee shop, which would open up our work opportunities 2000. So I liked this idea of how many different legs or you could expand and because that’s what we’re trying to do to give opportunities to people with Down syndrome. And like coffee. Yeah, it’s really great. If you focus on people’s strengths and you start like start a business with that thought process, even your own strengths. You know, you’re just talking about what do I want? Like okay, how about low capital in the beginning, how about not a brick and mortar store? We can do something, you know, I mean, you made it so it was accessible for you and your family and and what your strength was and is just goes right into what we’re talking about. Absolutely. I mean here in town, Lexington, Massachusetts, I mean, they shut down Starbucks because they couldn’t get enough baristas. There’s a lot of challenges around the business world right now and you need to think about how you feel
40:00
At what’s phenomenal as you, you essentially set Cooper up to be a CEO, at some point down the line, if that’s what he chooses, that he wants to do, I would be thrilled if that wouldn’t be the case. But we’ll have to see if we can do yes. And that’s one of the things you said too, is I don’t know where he’ll be, which is such, like, all of these things are such gifts, because, you know,
40:23
I’ll bring it back to my daughter who’s, you know, going into the 11th grade. And everybody’s focused on, you know, for her to spend her summer doing things to prepare her for when she prepares to go to college, which is in like, two years. And there’s such this focus on not this moment, but putting so much energy into this other thing down down the road for her, she gets overwhelmed about this moment in front of her like to be able to enjoy that and the gift of Cooper is you’re like, Well, let me let me go ahead and take some of that stress out of the way. And you’re giving the power, essentially, to your family and to Cooper, because it’s not based upon if society doesn’t evolve in the way that we hope it does. And I feel like we’re evolving with diversity and inclusion, but just in case, you’ve really created this great environment that would not only benefit Cooper, but other individuals and your community. I mean, a good coffee shop is good coffee. Like, to me, that’s a great asset. It’s a central part of life. Right. And I feel like if we go back to like, when we get the diagnosis, there’s all of this blah, that isn’t really depicted of the actual journey. And we’ve spoken to so many parents who, on this journey, it just elevates your life, like it elevated your life to create this, you know, altruistic entity that supports so many and does such good in the world and gives back in a way that you probably wouldn’t have done if if you wouldn’t have had Cooper, I mean, the actual story, the actual information that we should be given at birth is your child is going to elevate your life in every area. Like if you would have been given that maybe your heart wouldn’t have felt so heavy, maybe it wouldn’t have felt so empty. And I know that feeling like I felt like the ground was pulled from underneath me and I couldn’t breathe. I think for me, I would have had a no that probably in my youth. I think as an adult, I had already had a mindset of what things were. So when I was told that information, I’m not sure if in that moment, I could have been given anything. I think Johanne said that to where he needed that time to like feel that darkness or just get through that. That’s why I feel like inclusion in school. And the workplace, in our youth is so important that if I had learned these, or been given these nuggets of information of about Down syndrome as a youth than as an adult, I would have taken that that news a lot differently. And I I would have benefited from knowing people with Down syndrome much younger, which would have only helped me. Well, yeah, definitely. I mean, and you probably know these figures too. But mindware has been a remarkable change in the trajectory of people with Down syndrome. If you go back to 1920s 1930s. The expected length of life or personal downside was nine years because you the medical community didn’t know about the heart defects and the other things but today, I think roughly half of the kids that are born announcing downside is immediately wheeled into surgery and they take care of heart heart issues. 1980s the expected length of life or personal downswing was 25. That’s not long ago. Now they can live into our 60s or 70s. We as a society and as a medical community has learned so much about syndrome in the last 3040 50 years. And the people are with us now to much more degrees and when we were young, they were not in classrooms, etc. So I completely agree with your point that yeah, you’ve had a very different view if you had grown up with Down syndrome around
44:14
Well, Dr. Scott Co was who is a doctor near you and Mass General know him? Well, yeah, we’ve always heard him say that. Yeah, here we are with this progress. But the chromosome has never changed. It’s society changing. It’s the medical community changing, deciding that not only can are these medical advancements possible but but that they’re worth doing for our children to you know that this life because of experiences with with with other people this life is as important as any life you also have people coming up that had some inclusion or had people in their life that had Down syndrome, like Dr. Scott Coe, you know, he came up and he’s making changes. We see we can experience the journey and we see the injustices
45:00
So we as Ted green, just recently reminded us, it’s like a grassroots effort where we are internally, making the changes from the community where we’re bringing those insights. And it’s one of the great benefits I feel from social media is that the voices are being heard. And the stories are being told that tell a different story than what we’re given. You know, you you said that, if you had someone in your classroom that was that had Down syndrome, then you would have that nugget with you. What about if you just weren’t fed the false story? What if you, you weren’t given the information that’s wrong, you like parents worry when their child is born, if their child will live, and that fear is rooted in the fact that the mortality rate the morbidity rate was so, so much higher, but the information that never follows is it wasn’t because our children were weak or feeble, or it was just because they were denied life saving surgeries, they were denied the medicine that they needed. And now that is changing, and now you’re seeing, you’re just seeing a different, you’re hearing a different story, you’re seeing a different life being played out. I agree with you, it’s important to have positive information and relevant information. And that’s up to date about something. But that’s information. That’s the rational part. I think the big joy of Down syndrome is the emotional contact, which is I can’t describe it very such a contact between me and Cooper, which I when I come home from work, he can look at me like half a second. And he can immediately tell was good day, a bad day, he can read people to a degree that no other person can he is truly a gift then makes me think about my family still over in Sweden, and we flew over and I saw my one of my cousin’s where I haven’t seen her for years, she actually works. And if you ever been drinking Absolut Vodka, she works in a factory that makes an absolute bargain, and told her but through burned down syndrome, and she has broken, wonderful smile and said, Oh, I love those people were so great, because they have a few of them coming and working back out of them. And they are so to use an expression that’s kind of hard to translate that they are so
47:31
friendly is not the word.
47:34
What’s the Swedish word for it? It’s the sovereign Swedish word base of Goolwa, which is like they’re so emotionally comfortable there. So great to be around. There is an emotional connection there. And that is something you need to experience what you can’t get to by just hearing all the rational stuff and all the facts and all that there is a mysterium that you can’t get to unless you you interact with someone.
48:07
It’s like the golden ticket. And Willy Wonka. It really is. Because when you’re saying that, you know that emotional thing, I think society will have their own description of their an angel or they’re always happy, which I think we as parents know, that’s not necessarily true. So we fought that for a really long time. But it’s it is it’s like you have this little healer. And I never want that to change in Liam, he’s somebody who is so present in any moment that he he really sees you. And I think that that’s it like was I ever really seen before somebody who just can cut through like any kind of whatever, I’m trying to pretend as my facade, if I’m not 100% And someone who celebrates with you, you know, the good stuff. It’s not just like, if you’re sad, it’s like, yeah, like if you’re happy about something, and Liam’s along for the ride, he’s going to unleash your real joy because you’re gonna, you’re gonna be happy to where it’s cool, like, so nobody like looks too hard at how happy you are. But Liam’s gonna be like, he’s going to top notch you to where you let go of that shell, and soap and celebrate life and celebrate the moment at hand. And that is this enormous gift that you write. You can’t put it into words. I wanted to know the Swedish word because it was like that might be it’s something that can’t be. So as we’re talking I got my mind goes back to communication. It’s not it’s not the word. It’s not being able to say the word right Johan, you can’t say the word. But you know the feeling. And you communicate that with like your face and everything and, and that is the gift like if I could tell every parent like that. This isn’t going to make sense but like just when you’re ready for it. It’s such a gift and it’s such a shame that
50:00
It doesn’t, it doesn’t get exalted. It’s such a shame that people don’t see it or understand it. Absolutely. And that goes back to my, my dharma house question on my phone wouldn’t be able to learn my son.
50:13
He does. But it’s not a dumb question. I don’t want you to beat yourself up ever. Because I think there’s so much guilt on this journey. Because I hit a lot of dumb questions. I think I was lucky. I didn’t write them down. Because then I would read, I’d read them. I think you had an iPhone? Did you have an iPhone, then? I didn’t know you didn’t have an iPhone? Three? I don’t know. But my hope is that new parents don’t feel that. But I don’t think 13 years ago and 12 years ago, there was enough information or stories out there or not the information, it is a choice, what do you do what’s apparent?
50:48
If you’re a good parent, you don’t have a choice. You’re gonna love your kids no matter what. I don’t beat myself down over it. But I’m just amazed how I could have been in that place. Now, when I have all the facts on all my experiences. I’m like, How could I ever thought think that way? I mean, it’s like it’s alien to me. That’s a good point. Because I think most parents of children with Down syndrome will look back at who they were prior to their child. And they’d say, Man, I am totally different person now, in certain aspects. Yes. We have a family friend back home in Sweden was a nurse. And she made this statement one, she says, all the parents are parents of kids with Down syndrome. They’re often so happy. It is like the Down syndrome kids choose the parents. There was a funny way funny expression. But there is a golden impact your life. And so you said you become different, you become better. And there’s a lot of joy, so much, right? So much that we there’s you we could talk forever and not find the word you’re asked to be experienced. It has to be experienced, and not in the way that it’s fed to us not in the way that we’re told at the beginning. In a in just real transformative. Can’t find the word way, you know.
We want to put a link to your coffee… do you have a dark roast? HA! Do you want to talk about your coffee for a minute? And we’ll put a link and people can order your coffee online? Because you ship everywhere?
As long as you’re in the United States? Yes, we do have a dark roast, we have a medium roast and a dark roast. The medium roast is called Morning Blend, and it’s very smooth, but still very rich. Whereas a lot of people but sometimes have been preferring Dark Roast actually like the medium roast because it is pretty rich. I tend to use a little bit less water when I brew that one and it brings out even more full character. And it’s really, really nice for them. So that’s the Morning Blend, and we have a dark blend called kickstart. So sometimes you need or kick get going. They’re both available online, we’re an online business only. And we ship without us. If you’re a repeat customer, you can make sense to sign up for a subscription and then you get shipping free. And your website. Website is t 21 coffee.com. Every every parent needs coffee unless you’re a tea drinker. And that’s okay, too. But I have to tell you, Bane of the last almost 16 years I’ve needed coffee. Well, since since you live in California, there is a study their famous medical study called the oldest old, they wanted to look what kind of factors explains whether you make it into your 90s or not. So they took a large cohort of people that are 60 years old. And they followed them for 30 years, and check what they are exercising, eating, drinking, etc. And looking for factors that could explain whether you would make it into your 90s or not. So there was only three factors that matter. One was alcohol, the equivalent of a glass of wine a day, increase your likelihood of making it into your 90s. Exercise. If you exercise 30 minutes a day and um doesn’t have to be anything extreme. Yes, walking the dog or something but doing something active 30 minutes a day, increase your probability make it into your 90’s. And the third factor was coffee. Two cups of caffeinated coffee, decaf didn’t work. But caffeinated coffee increased the likelihood of making it into your 90’s
54:45
Well, you didn’t have to give me that information to make me want to have coffee. But yeah, I’ll think of that next time I grab a cup.
54:53
It’s been so nice to meet us Johan. I’m so glad that we were able to connect and thank you so much for your openness and honesty and sharing your story?
Oh, it’s great. I really enjoyed this.
55:07
Have a great day.
Thank you so much. See you guys.
55:11
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If We Knew Then - A Down Syndrome Advocacy Podcast 