Act 3 - Acceptance

[Bernie] It really is just that. It’s grieving the expectation but then accepting what you have, right? Those are, like, two different phases of  ….

There is a point where photography and Bernie’s path to acceptance came together. Call it another grace. It was during the pandemic, right in the middle of shelter in place. The whole world was adjusting to a new reality, going through its own acceptance of things. 

[Bernie] I just was watching everyone around us, just like, kind of grieving their normalcy and their life. And while it was very challenging and hard for us, I also was fine with it. Cuz we had already experienced the loss of whatever expectations we had on life. So Craig and I kind of, we adjusted mentally pretty quickly cuz we were like, oh this is what life is, special needs parents is, just kind of pivoting all the time.  And like what normalcy? We don't have normalcy anyways, nothing's ever normal in our life. So we're just, it was kind of a, we felt like we had stronger muscles in that, in exercising, you know, the movement of acceptance through the pandemic. 

And that kind of woke me up a little bit to be more curious about how I can take that energy and keep my creativity alive through exploration with photography. And, you know, I started taking pictures of our life, our home life, throughout the beginning of the stay at home orders for, I think I did like a 50 or 55 day photo essay, just for my personal, just to keep me going and motivated.

And through that, I learned a lot about, um, how I see the boys and how I experience, like if I'm representing our life accurately, visually. That was just the goal was to kind of take moments that I'm seeing that feel beautiful, but capture the emotion of what it felt like to be home. Just the four of us without any services or school or support or while we're working and they're trying to do school. 

And that, that again, kind of took me into another level of acceptance, of the whole world kind of accepting where we were at. And then realizing in close quarters, this is who I'm, these are, this is our family. This is who we are. 

How can I enjoy it and not manipulate it to look a certain way? Cuz I think also with photography, you know, a lot of people like you set up, you set the stage, it's capturing a performance sometimes. You know what I mean? Going back to like wedding photography. It's like, okay, let me pose everybody. You stand here, you stand here. This is how I want everyone to be and we're gonna make this look a certain way and we want it balanced and kind of doing the opposite of that.

And like, how do I find beauty in the, uh, organic world or organic life that we have, in the mess? You know? How do we make it, the mess, seem more acceptable and more beautiful for other people to understand, you know? To communicate like, yes, it's different, and it might seem, you know, out of the ordinary for other people, but this is our life and this is how we see it. And if maybe you can take a peak inside of what we see and find beauty and connection in it too.

You know, it's not that different from other people. It's like intimate imagery of the insides of our house and how we work and emotions and grief and joy and, you know, exploration. I don’t know if that makes sense. That’s, I think I'm always kind of moving through different phases of acceptance though. It's never, like, I mastered it. It's a constant work in practice you know? 

[Seth] What were the, some of the things you learned to accept or see in your kids during that time? Was there something that you became aware of, that was revealed to you? Was there a deeper sense of who they are? 

[Bernie] Yeah, I think the acceptance of, like, expectations, that we can't place too much pressure on them. Cuz the more we push the further it pushes them away and, like, they shut down. So, you know, for example, just kind of taking control over what and feeling them intuitively a little bit more on what brings them joy or makes them feel safe.

It was more about, like, boundaries and thresholds, like how far can we push them before it's too far? And then they shut down. We want them to continue,  think with the education specifically, we want them to continue to learn. We wanna give them learning environments, but that got taken away from us. Right?

Like we were all about inclusive education and that inclusive school disappeared for a little bit. Cuz we were all at home. So then it was, like, well I want them on Zoom, but Zoom that's the whole, that's the opposite of what we're trying to do here, you know? And they don't like being on screens like that.

And that was crazy hard for them. So then feeling like we lost our community, cuz they would barely even go, they weren't motivated to go to Zoom school. And I think just moving through that acceptance of like, okay, we're not gonna force this on them cuz they're not gonna get out of it what they would get out of it at school.

So instead of waking them up and fighting with them every day for, like, hours, like, “Hey, look at the screen, you're on Zoom, get on Zoom,” while we're trying to work. Just really listening to them and like, Hey, what's the minimum they can do while still keeping them somewhat involved and then giving them other opportunities to grow and kind of, you know, sculpting that around them.

I think that was a big lesson for sure of, like, let's just have them sign in and say, “Hello, good morning,” and then close the computer. Cuz, who cares, you know? This is where, again, acceptance and letting go. Like that's not worth the fight, cuz they're not gonna get anything out of it, if they're just, like, screaming the whole time trying to be on Zoom. 

And then we're not getting work done cuz we're trying to force them to sit on Zoom. No one's learning. There's no learning happening. You know, I've definitely a firm believer in, you can't learn if you don't feel safe. You need to cultivate a safe environment and a safe culture in order to grow and learn. And if you're in fight or flight or freeze mode, then you're not taking in any information.

And that was every morning was like, fight, fight, fight. You know, I don't wanna do this. So really learning how to listen to them and being like, hey, they, they can have agency over this too. You know, let's, let's see what they wanna do. It's not just not doing anything, but it's giving more options and being more tuned in to the way that they individually learn versus what everyone else is doing. It's hard cuz you know, everyone was sharing that same experience.

[Seth] And you decided to, or somehow the idea came to you, to do an art exhibit from these pictures that you took. This photo essay. 

[Bernie] We decided to do an art exhibit because we actually did a photo book first. But this was a friend of mine, her name's Lindsay. She's a creative director at a company I used to work with and she had been seeing my pictures I was sharing, cuz I was doing that photo essay on Instagram. She was like, “You know what, I think the images you took have a story to tell.”  

But I had like hundreds of pictures I gave her and the ones that she pulled out in the series and the way that she put them, told a story of the beauty and the struggle and the joy and the calm and the chaos that we had in our life. I, you know, it was, takes someone else sometimes to show you what you have. Like, she almost had to take it and edit it for me, cuz I don't think I could have done it.  

I asked her if she wanted words in there or what she was looking for. So I took some of my favorite quotes. There's a poem called “Welcome to Holland” that this woman, Emily Peril Kingsley wrote. So the analogy is that you're, for parenting, that you're getting on a plane and you're going to Italy and you have all these plans to go to Italy and see the museums and taste the food. And you're playing unexpectedly lands in Holland and you learn that you're never going to Italy and you can never ever get there. And that just can't be a place that you're ever gonna go. 

And it's about, um, the beauty in Holland though. You know, just because it's not Italy doesn't mean it's not beautiful and that there's Rembrandts there and you can see the flowers and it's a beautiful country. It just moves at a different pace and a lot of parents in the special needs community love that because it's called Welcome to Holland. So it is about leaning into the, what you have and where you're at.

So I asked her permission to use the poem in our book. And she, and I was like, what, you know, what's the copyright? Do we even have to pay a fee to license it?  And she was like, as long as you give me a copy, you can use it. And she gave us the rights. That, like, gave agency. It made me realize like, oh, this could be something kind of powerful that we're doing. If we have this poem in here and some quotes and Lindsay gave me the layout when she finished and I was like, touched. It moved me. 

And she was like, you should name it. And then, you know, I kept coming back to the word acceptance. Like it just reminds me that I need to accept all the time of things I cannot change, you know? So we just named it that, and then from that moment we just decided to print books and we're like, maybe we can sell these and they could be art, coffee, table, art books, and all the proceeds can go into a fund for, like, the kid's future so they can be independent with whatever they end up doing with their life.

So we sold their artwork because the boys both liked doing a lot of art. And then that turned into, ee should have some large scale photos just to really have the whole event, come to life and be a space that you can walk into and actually feel it. 

One of my friends, Amanda, she leaned in and was like, I can cater it. And then everybody, you know, my friend Rachel was like, I can help organize it. Everyone just started, like, our friend's husband, I can DJ it. Just, everyone started leaning in without even it being forced. It really kind of naturally came together and was so beautiful that it, that that moment showed me, okay, well, even if no one comes, we already have a really strong core of people who actually care and love them. And are part of this community that's gonna help them thrive because they care about who they are as people. And they don't see them as a burden or different or weird. They just see them as them and they already love them and accept them.

And it just showed me what a strong community we have. I mean that, like, people really do make things happen and that's what it's all about. And so in our, in our path of acceptance, we also cultivated the very thing that would combat my biggest fear, which is community and people who already have grown to accept them and love them. 

To have everyone show up in support I felt the love wrapped around my soul from everybody who showed up. it just comforted me. And again, leaned into how acceptance is such a key part of it. And this alone brought so many people together. So this must be the right direction we should be moving in. If, you know, we can get this many people out here and aligned with the same message, it's it's inspiring. Gives me hope in a world of grief, you know, we need that to keep going forward.

[Seth] You're really trying to combat a few things, but the stereotype of how people see kids with special needs. 

[Bernie] Yeah. Yeah. 

[Seth] What is it that, what is it that you hope people see?

[Bernie] My hope is to change the way people see people who are different than them. I want them to see them as fellow human beings versus, you know, someone that's not good enough or something that scares them because their behavior's different. I wanna show them that this is just who they are and it's okay. And you don't have to like it either, but you don't have to reject them.

It’s also showing people how to accept something they can't control. No, I, that's a good, that's a really good question. I guess I'm not really aware that I'm trying to get people to see things differently, but I, I really am, especially through photography, you know? I mean just through sharing photos of our everyday life, I just, I like capturing it cuz it gives people insight onto who they are as people.

[Seth] You wanna show people what you see in them.

[Bernie] Yeah, there it is. Yeah. That's, yes. I wanna share my vision of how I can see the beauty in them, because if they can see the beauty I see, then that gives me hope because then I feel that could change how everyone sees something that maybe they were once afraid of. 

Just as using that, as you know, just as a stepping stone. You don't understand it and it's something that you judged or you had a preconceived notion about who they were or what autism looks like, because it looks different in everybody. And then you see, like, a connection to that somehow. Because I'm able to, because I genuinely see it that way. So it's gonna come out in my pictures or what I do in life or my actions. Then it's, it's hopeful. I'm trying to, it's, it's all around hope.

I was there that night for the art exhibit, along with about 150 other friends and family. And what was so moving to me was that it was the first social gathering for just about everyone who came. The shelter in place orders were loosening. People were just glad to be in the same room with other people, people close to them, they hadn’t seen in the flesh in a while.  

Towards the end of that beautiful night, there was another one of those moments. The DJ stopped the music and people gathered around to hear from Bernie and Craig. Craig got up first.

[Craig] The show's called acceptance. And, you know, there's the, the meaning of this word has changed a lot for me this past year. Um, because acceptance is, you know, usually just something you like, you accept negative circumstances. Like I accept that it rained on my vacation. You know, I accept it that I'm not gonna be on Saturday Night Live. (Laughter). I accept that I am not gonna be the starting forward for the Lakers or whatever.

But, um, that's not what we do with people that we love. We don't just, you know, accept them and then kind of turn our back. This acceptance is about celebrating the person. Celebrating ourselves, just the, the way God makes us. And to say, you know, we belong in this world. We deserve to be included in this world for the value that we have to offer to the world.

And, um, there is one person that I want to thank. There is one person I want to single out. Um. The person I want to thank is Bernie. Like she knew that the way out of this was to, to bring it out to the world and not just keep it in our own house. And, and I'm, I'm grateful for that, for you, forever and grateful to all of you for answering. 

[Bernie]  You know, the fear of special needs parenting is, what are my kids gonna do when we go. And that's dark but I know we all think that as a parent, but it's a little different when you have two. And through this experience, we've seen through, through all of you. We're not alone. The boys are loved. They're gonna be okay because of all of you.

I wanna give a shout out to my neurologist Dr. Cobo. (Crowd cheers.)

You changed our life. We’ve been looking for you for ten years and we found you. So thank you. Our doctor is here. (Laughter).

So everybody please raise a glass.  I wanna say thank you. I wanna make a toast to you all. And I wanna raise a toast to Frank and Charlie for teaching me a lesson that I would have never learned without them in my life. So here, here! To Frank and Charlie, Enjoy, have fun, drink and we love you all. Thank you. 

[Crowd] Yay!

 Credits

This episode of the Soul Search podcast was written and produced by me, Seth Dickson. And is dedicated to Frank and Charlie Dickson, love you guys. 

Special thanks, of course, to Bernie Dickson. There’s a link in the show notes to learn more about the Acceptance Exhibit, including lots of amazing photos from that night. 

Thanks as well to my brother Craig, for his reading of Welcome to Holland.

Music credits for this episode are in the show notes.

Audio engineering help was by Lenny B. Thanks Lenny.

And finally, thanks to you for listening. Soul Search is dedicated to your spiritual growth. Be sure to check out our website thesoulsearch.org to find resources, including individual coaching, you can put to use in your journey to authentic living.

See you next time.