What Are We Doing Here?

So, what exactly do we even do here in Ukraine?  Wide Awake International has a lot of moving parts and I don't blame you if you have a bit of a hard time keeping them all straight 😆.  In this episode, I introduce our boys and our team, explain the full picture of what we are doing here in Ukraine, and describe the different focuses of our work here. It's an info-heavy episode...you've been warned!

PS: My brother, the super talented  Matt Bittner, is our new sound designer for the podcast! The music is his and it's perfect. 

Read about when we adopted Vlad

When we brought Boris home

Bringing home Ruslan and Anton

Bringing home Sasha

Wide Awake Int. Org Chart

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The vision of Wide Awake Int. is to bring hope, love, and dignity to people with disabilities in Ukraine. We are living that out by bringing our friends out of institutions and into family life.

Transcript

Hi, this is Kim, and welcome to the Wide Awake International Podcast. This is a place where we share stories of bringing hope, love, and dignity to our friends with disabilities here in Ukraine. This is episode number four:" What are we doing here?"  In the first two episodes, I shared our origin story how we got to Ukraine, what led us here. But before we went any further, I really wanted to make sure that everybody has a clear picture of what's actually going on here. We have a lot of moving parts, and a lot of different names and people a lot of the same names (several Mashas, you'll hear that in the story). But I want to make sure that you all know who's who and who lives where and what are we doing? What makes this Wide Awake machine click and where does everybody fit into the picture? Because Wide Awake isn't just Jed and me and our kids. Wide Awake includes our boys, our team, our extended family here in the city, there are a lot of people that we consider a part of Wide Awake here in Ukraine. And so I think it's important to tie it all together. So you'll know, in the future, who am I even talking about and what's going on around here. 

I think the first most obvious place to start is our boys. I talk about our boys and I say "boys" all the time. They're not boys. I mean, Sasha is a boy, he's 15. But the rest are men, they're grown men. And I don't say boys out of disrespect. I just say boys, because, you know, they didn't have a childhood, their childhoods were robbed by the institutional life. And so in a lot of ways, emotionally, intellectually, they're like children or even very small children. And, and we love them. I love them like they're my sons. And so we call them "boys" because it's just it's our term of endearment. It feels weird to call them "the men". We call them "the boys" or "the guys". But when I say the boys, I'm talking about our men/boys with disabilities that we've taken from Romaniv who are our family. So Romaniv is the institution about 45 minutes away from here that I talked about in the second episode, the one that we visited when we came here to Ukraine for the first time, and it's a mental institution. Now it's called like us something like a "Neurological Psychiatric Rehabilitation Center", which is just a fancy way to say a mental institution. It's for men only. That's where all of our boys came from. 

The first is Vlad- Vladislav. We used to call him Vladik. That's kind of a little boy name and so he has grown into a Vlad. Vlad is 21 years old. I cannot even believe that. We adopted Vlad six years ago from Romaniv, when he was 15. He has Apert Syndrome. And Vlad is a worker man. He has a job. He works three mornings a week at an electrical supply shop here in our town. And that's actually a miracle which I'll talk about another time. But he lives with us. He's our son. He's a Johnson he's a big ray of sunshine everywhere he goes. The next is Boris. I say Bmo a lot. That's just what we call him. I think Jed probably started it- it sounds like a Jed thing. Bmo is a yeah, don't ask me what it means it's just Bmo, and that's just who he is. Bmo is 29. We've had guardianship of him for four years. That's also crazy to think of. And he also lives with us in our house. He's not adopted, we have guardianship of him because he's already an adult. And Bmo doesn't talk he's nonverbal, but he definitely communicates his wants and desires and what he doesn't want and doesn't desire. He's obsessed with cookies, and all things sweet. Bmo is like the star of the show. When we used to be back when we used to be on social media. Bmo was like the hit like I knew if I post a picture of Bmo everybody's gonna go wild. He's just, he's precious. The next is Ruslan Ruslan just turned 35. His birthday party was on Friday. We've had guardianship of Ruslan for three years. He has cerebral palsy, which affects mostly the way he walks and he is very tight in his body but he can walk. He can run, he can jump. He is hilarious. He has a really funny sense of humor. And he is the most verbal of all the boys besides Vlad. He can be hard to understand but he definitely can communicate his thoughts. Ruslan used to live with us but now he lives in an apartment in the city with Luda, a member of our team- Luda and her teenage son, Nazar. Ruslan is better in a smaller, more controlled environment, aka not our family home, which is packed to the brim with children. Imagine that he doesn't thrive in that situation? I can't even imagine!  Ruslan loves coffee.  He loves to go to cafes with people and get a cappuccino, and he calls it a “cappuccinko”. That's his favorite thing is to spend time with friends. He's very social. The next is Anton. Anton is 33. We took guardianship of Ruslan and Anton at the same time, three years ago. He lives in the duplex and the duplex is on the same property as our house here in the village. And it's right behind our house. Anton has Williams Syndrome. And when we first bought him out of the institution, he only would say one word, the Ukrainian word for God. But now he is in a season right now blowing up with language. He talks a lot and it's very, appropriate and understandable. And he's not just repeating what other people say. He's saying words just because he wants to say them. And it's really exciting. He's also super musical. And then last but not least, is Sasha. Sasha is 15 and he lives in the duplex also with Anton, and we just took guardianship of Sasha last May. So it hasn't even been a year yet. Sasha is also nonverbal, but not quiet whatsoever. I think there could be a myth that if someone is nonverbal, they're quiet. And I want to say that that is completely the opposite here! Our Sasha is definitely the loudest of everyone. Yeah, they're always communicating Sasha and Boris, always communicating with us just not with words. But Sasha is going to be a giant when he grows up. He’s growing like a weed, his hands and his feet are huge. We're preparing ourselves for a giant on our hands.

So I said that Anton and Sasha live in the duplex. And the duplex is, like I said, right behind our house. It was built by Wide Awake. It is was built to be a forever home for our friends from Romaniv. Each side has space for four boys on the bottom floor, each of them to have their own bedroom. And then it has an upper floor with bedrooms for the people that are going to live with them. Anton and Sasha live in Side B of the duplex. And we have a friend from the US, his name is Grant, and this month, I can finally say this month, this month grant is moving here to join us in Ukraine. He is going to live in Side B of the duplex with Anton and Sasha. And we are very, very, very excited about that. And then side A of the duplex is just finishing up- like they're just doing the very last little details there. And then we'll be waiting and searching for house parents to live there so that we can bring more boys for the institution to live in that side of the duplex. But for now, we're using it for special events, our team has office spaces there, and we also have a couple of therapeutic classrooms there in the bedrooms. So we're definitely making use of that space. And then as soon as it's ready we want it to become a home

Did you know that we have a team of 14 people, including me and Jed? Yes,

14 people and when Grant comes he'll make number 15. We are not a small operation here! It takes a lot of people to make this happen and to create the foundation for growth. Our team is all Ukrainian except for us. And we are excited for Grant to come. We feel that outside experience and perspective are really really healthy for our team and for us. We've been in Ukraine for a while now. And we always could use a fresh perspective to bring to our team. Also, we want to make sure that in the future, we'll always probably be bringing in more people from the west to help us and that's going to always be important. But it's also going to be really important to us that our team stays primarily Ukrainian. This is a Ukrainian work. And this issue of deinstitutionalization is an issue that Ukrainians need to solve and we’ll always be here to support it. But we really want this to be a Ukrainian work, primarily. 

So I want to tell you a really cool story of how we met a lot of our team members. Remember that when we first moved to Ukraine, we knew basically no one, we were volunteering for a local nonprofit called Mission to Ukraine, and I'll call it MTU. From now on. So we had a heart for the country, a heart for the work to deinstitutionalize people with disabilities, but we knew that God was going to have to bring us that help. Because obviously, we couldn't do it by ourselves. We needed to partner with Ukrainians. But we were just like, God, you're gonna have to bring the people because we have no idea even where to start. So the first summer when we were here, 2014, we volunteered at an MTU camp for kids with disabilities at that time, every summer, they would do a camp, where kids from the city who live with their parents would come to the camp and live there for 10 days or so. And every camper would have a volunteer and the moms would get to rest. It was so fun. While we were at camp, we met all these volunteers that were young adults, like teenagers, like 17,18,19, who all went to the same church. And they were all first-generation believers, they were not raised in Christian homes, lots of broken homes represented in that group. And they were just awesome servants. They were so high energy, so loving, super focused, hard-working. And we grew, our family, in particular, grew really close to that group that all went to this one same church. And we didn't have a local church at the time that we were really, that we had really committed to, we couldn't find a place where really felt like we fit. And so we saw this group of teenagers and we're like, somebody is doing something right with these guys. Like we’ve got to meet their pastor, we’ve got to find out what this church is all about. So we met the pastor, we started going to the church. And we that's still the church we go to now from this day. 

At that time, they were every school year doing this thing they called “DTS”, not the YWAM, DTS, but a different one. And they called it their Discipleship Training School, and where it was like a school year-long project where the pastor would mentor them, they would study the Bible, and then they would have an outreach of some sort and also serve in the church. Well, the DTS that was about to start didn’t have any sort of outreach, and the pastor approached Jed, and he was like, “Hey, these teenagers want you to teach them English.” Ummm that's gonna be a hard no, we didn’t sell everything to come to Ukraine and teach them English. Teaching English is a fine reason to go overseas, but that was definitely not our purpose. Jed said “They can go watch YouTube. But hey, if they want an outreach, and they want to come with me to Romaniv, to the institution every week, and help me with the boys, I promise that I'll speak English to them all the way there, and all the way back.” So they got struck a deal there. That group of DTS students, started to go to Romaniv with us every week for an entire school year. Jed got them helping with the boys, a group of boys who were the least interactive, least responsive, maybe didn't even want any sort of physical contact, and just had that team of teenagers sit with these boys day after day after day. And he just taught them to just be there with those boys not to be focused on a certain result, not to be focused on a certain like feeling or response that they were going to give you that was going to make you feel all warm and cozy. But just to be Jesus to them be a warm, safe, loving presence. Day after day after day, he taught them about reflective interactions where you sit next to a boy and you just sit quietly, and maybe he starts to rock and so you start to rock next to him and just kind of mimic his responses. It was really actually very powerful. And they got to see these micro micro-steps in the right direction with these boys where they would see like a moment of eye contact, or he lets me sit closer to him this week than he did last week. And then they did that for a whole school year. Once a week, they would go, and then once a week, they would come to our house and Jed would talk to them about God's heart for disability and, you know, just some social work type practices. That at the end of the school year, the last time they were there with Jed, he just thank the team for being there and said, “You know, I know for some of you like you never want to come back here to Romaniv again, you're done like you've been faithful but you're not interested in pursuing this work ever again. And that's fine. Like I bless you and I thank you for your help. But there are other ones here, who this really stuck with you and, and you want to keep going. And just so you know, like Kim and I are devoted to this work, and we're gonna keep going, you're always welcome to join us. And some of you might even want to pursue this as a job in the future. And if any of you are interested in that, you know, I'll help you like, let's get an internship going.” And almost every single person in the circle at the end of his little speech looked at him and we're like, “These are our friends. These boys are our friends, we're not going anywhere. We're with you.” And they just kept going. And they ended up being like these most faithful volunteers for so many years. And now from that initial group, at Wide Awake, we have a social worker, a physical therapist/occupational therapist, a soon-to-be second physical therapist/occupational therapist, a psychologist, and a special ed teacher. So that was God's amazing way of creating the foundation of our team that also started our relationship with the church here in our city. And that's almost our whole team comes from our church, not everybody, but almost everybody. So the church has been an amazing way that God has grown this work and this team so that's just a fun story of how our team kind of began.

And our communications and our newsletters we talked about Wide Awake International, which is this US nonprofit that I've been talking about. That's what this whole podcast is named after. But you might also hear me talk about Dim Hidnost. “Dim Hidnosti” in Ukrainian means “House of Dignity”. And that is the name of the Ukrainian arm of Wide Awake International. Wide Awake International is registered in the US as a nonprofit, Dim Hidnosti is registered in Ukraine as a nonprofit. The reason why it's called Dim Hidnosti, well, House of Dignity speaks for itself. We want to make homes and we want to bring dignity to our friends, but also “wide awake”, it just doesn't mean the same thing as it does in English. So that's why you'll hear you hear me talk about Wide Awake International and Dim Hidnosti, Wide Awake International funds Dim Hidnosti.  The work of Wide Awake International is lived out day to day in Ukraine through Dim Hidnosti. So our team has an Instagram account and a Facebook account and it's called “Dim Hidnosti”.  That’s us. It's Wide Awake, but it's focused more on Ukrainian people. So I hope that clears that up. 

So on our team for Wide Awake International/Dim Hidnosti we have three groups. We have our multidisciplinary team, which is headed up by Lesya, our psychologist. On the team, we have a special education teacher, an OT/PT. I know I said that before. But OT is an emerging field here in Ukraine. And so the degree for occupational therapy is combined with a physical therapy degree. Then we have a soon-to-be second OT/PT. And we have a soon-to-be speech pathologist. That makes up our multidisciplinary team. We say “MD Team”. They are making and helping the team implement individualized learning plans for each of our boys. Once the boys come out of the institution, there's no safety net for them. There are no structures in place for them to grow. No day centers, no group homes, no work programs. It’s difficult to find any professional who will see them as worth the effort or able to learn. We have to make it happen ourselves. We believe that the people who live in the home with the boys, so in our case, Jed and me, and then Luda who lives with Ruslan, and in the future the house parents, we’re the ones who know best the areas where we want to see our boys grow. We see them at home every single day and we see what areas of life normal life, can they become more independent, where do we really want to see them grow and develop. So then the specialists take our wishes and based on those they develop plans for the boys, goals, and all the steps that they want to take to see the boys reach those goals. That model of it being parent-led instead of specialist-led is the complete opposite of every kind of therapy that I've seen here in Ukraine. Therapy in Ukraine, as far as I know, is very passive, like you take your kid to the therapist’s office. They do exercises with them, their interventions, and then they send you home and while you're at home, you just wait for your next session. There's nothing that you do at home. Everything is done by the specialist to the child. So we really want it to be parent-led, parent-motivated and the specialists aren't coming in saying “I'm the smart one and I know what to do.” They're hearing the heart of the parent, and then taking that and molding it into individualized learning plans. And that seems to be working really, really well. So anything that we want for our boys, we have to make it happen ourselves. 

The second group on our team is called the Care Team, I lead that one, and that is made up of our live-in assistants, so people that live with the boys. Right now, it's just Jed and me, and then Luda who lives with her son, but in the future, it'll be more. Grant will join that team, the house parents for Side A of the duplex, they'll join that team. And then also in that team are the assistants who come to work Monday through Friday, 8-5 to help care for the boys. Our care team, we build home for the boys. If they don't feel safe in their home environment, they're never going to grow and learn no matter what therapy we try. So when they first come out of an institution, they can't do anything for themselves. They don't even know how to be people. I'll talk about that in another episode, what it's like to bring them out of the institution, but I can't stress enough how much they don't know, how much they don't know how to do. 

The third group on our team is the Operations Team. And that's really overseen by Jed. And that's our social work, logistics, building projects, finances, navigating Ukrainian law, documents, all of that. They are the ones that work behind the scenes to make this machine run. Because like I told you before, in episode three, it just takes a lot more work to live here. And so they make it so that we can do the things that we do. Otherwise, we'd be spending all of our time chasing documents and figuring out the best place to buy food, instead of actually spending time with the boys. So they are a really important part of our team. 

Our team makes life happen for our boys. They live with them, they love them, they teach them. They are the boys’ family. So the boys’ family goes beyond just me and Jed and our kids, it's our whole team. They also provide weekly art classes for our boys, and a weekly thing on Fridays called “Fun Time”, which means fun time. Where there are different activities, our special ed teacher comes up with them, they might have a party, well, that's when we celebrate all of our many, many birthday parties. Or they might go sledding or go for a picnic. And it's not just for our boys. It's also for our extended family of boys in the city, which kind of leads me to the next focus of our work here in Ukraine: our families. Like I said before when we bring our boys out of the institution, there is nothing set up for them. There is no support system for them there is nothing, whatever we want to do for them, we have to make it happen. So families that are just living their lives out in our city that have children with disabilities, adult children with disabilities as well, there’s also nothing for them. And so you have all these families living in isolation, just slogging through their days, trying to fight against a culture that doesn't want their children, fighting to prove the value of their child fighting for the rights of their child. And it's a monumental task, monumental to live life here with a child with disabilities. And as they grow, it just gets harder, it doesn't get easier. So God has put some families in our lives, that it's just been a natural fit these families with our team. There are seven families; they are moms with their adult sons with disabilities. And they have just become an extended part of our family. We celebrate birthdays together, holidays together, we support each other. And these relationships are super important for these families. The moms know that they're not alone. They get to have this camaraderie together. But it's not just important for the moms, it's so important for the boys and for our boys, our five boys. It's important that they have these peer relationships where they get to invite, Ruslan gets to invite his friends to his birthday party, and in that situation, his friends are not just the people that help him live his life, but it's also his peers. Like that's so important. And I'm so thankful that God put these families into our lives. And you know, several of them, they were basically completely alone. They had no one. Their extended family could care less. society could care less. And God just knew they needed us and we need them. And we're, we're just so thankful that we get to be there for each other. Last week, actually, Jed was granted joint guardianship with one of the moms in that group of her son, Maxim. Now she's getting older and a few years ago, she asked us if we would be willing to take Maxim into our family, once she was no longer able to care for him, or once she died. You know, she had no one, no one to fall back on. And if you don't have a plan, if she didn't have a plan for him, once she was gone, he would go to an institution. And so of course, our whole purpose of being here is to get people out of institutions, there's no way we're going to let our friend go to the institution. So after many, many, many months of trying to figure out the legal process of how to make it work, Jed was granted joint guardianship. So now there's no question: Maxim will legally be able to come to us when he can no longer be with his mom. And Jed said after court. And when they were in the car, she just was like, “I can sleep now, I can sleep at night.” She knows that Maxim is going to be safe and that he's going to be loved with us, and God put that relationship in our path and, and we're really, really, really thankful. We love him and her very much. 

The last part of our work that is really, really important that I wanted to talk about is Romaniv. A big part of our time and investment here is still given to our boys at Romaniv. Every Thursday, members of our team travel to Romaniv to spend time with the boys in the Isolation Hall. It's about 45 minutes away from here, it's on the outskirts of a small town. And while they're at Romaniv, the team works with a psychologist there to try to implement individualized learning plans for the boys in the Isolation Hall. You know, it's one step forward, 20 steps back with the boys there because they're still living in the place of their trauma. They're not in a safe environment like our boys are here. But we want to try to keep them moving forward in their development. And our reason for that is because we want to prepare them for life outside of the institution, because we believe in the future, they will not be in the institution, they'll be with us. Or they'll be with people like us- people that will give them the love of a family. So we are working towards that with the future in mind. We always focus on the Isolation Hall to build those relationships and just focus on that group of boys. There are other organizations that visit the other boys at the institution. Our dream is to empty out the Isolation Hall. We don't want it to even exist, actually, we don't want the institution to exist. But we'll start smaller. We'll start with the Isolation Hall. And we keep going every week because obviously, it's important to those boys. They know us. We’ve known those boys now in the Isolation Hall for eight years. They know us, they love us. And we love them. They wait for us, they ask about people, you know, if they haven't seen a certain member of our team for a while they ask. So we just keep going because they know us and they need us. And we go because we need them. It's really important for us to go to keep our hearts soft, to keep our hearts empathetic, to keep our perspective straight. Our boys at home here, you know, we forget how far they've come. We live with them every single day. You might come and visit us here and leave and come back a year later and see big gains. But we don't see that always because we're so close. We're too close. But they can forget a skill or go backward in their development or display aggressive behaviors, and it can be really, really defeating. Like after this many years you still hit people when you get mad that it's really frustrating. And then we can go to Romaniv and we see where our boys spent years, some of them decades of their lives and we can remember that they survived hell on earth. They really did. Like, I go there and I see where they were and I can picture them in those places. And I just think I don't think I could survive a year here and you survived- Anton survived, what 25 years there, Boris 13.  I mean, they are so incredibly strong, and they've come so incredibly far. And who am I to get frustrated with them? When they survived hell, I should be happy that they can even smile and look me in the eye. When I come home from a trip to Romaniv, I'm just so thankful to see them walking around with their clean clothes and their clean bodies and their toys, and they're warm, and they're eating snacks, and they're cuddling on the couch, and they're safe, and they're loved. Our whole team, we all need those trips to keep our perspective of how far our boys have come and to be thankful for where they are now. 

Also, our trips to Romaniv help us to discern who we're going to take out next. We need to keep going and spending time with the boys and asking God to speak and to show us who's next. Because we can't just take people based on “Well, he needs it more”, they all need it. Or, “He would be really easy.” Well, not necessarily. And is that the right perspective? Like we just take who seems like they would be easy? Absolutely not. We need to take the next boy that God says is the next person to come into our family and not somebody else. We need to hear from the Lord. And the only way we really hear and see is if we keep going and keep going and keep going. In the summer or in the fall we hope to bring another boy out. And so it's important to keep our feet in there to know how our boys are doing. 

So that's an overview of what we do here at Wide Awake International/Dim Hidnosti, which means House of Dignity if you already forgot what that means. I hope it's made everything more clear of all the different moving parts, I think I'll put an org chart on our blog and post that in the show notes if you're more of a visual person and you want to see the different moving parts. You know, our life here is really full, but it's also really focused. And the longer we're here, the more I realize how blessed we are to be a part of a work that has such a laser focus. We never have to wonder as a team “Wait, wait a minute, what are we doing here?” What are we doing here is right in front of us every single day. We're caring for our boys and creating a life of love and dignity for them. And in the meantime, trying to change the culture of Ukraine to be more accepting and loving toward people with disability. If our team has ever wondered, “Why are we doing this”, or someone feels like they lose motivation, go to Romaniv. You're instantly reminded of why this work is so important, why we can't give up, why we can't let up, why we have to keep moving forward, moving forward because our friends are dying. Our friends are living without love, without dignity. And we have to keep chasing that dream of deinstitutionalization. We have to keep pushing to bring our boys out. That's why we're here. And we're so blessed to be able to have the opportunity to be reminded of that. I'm so thankful that we're here. I would never ever want to be doing anything else. If you have any questions at all, I always leave our contact information in the show notes. And thanks for all the great feedback that you're loving the podcast. We're having a super fun time doing this. And yeah, it's a great new project and I'm glad you're liking it too. So we'll talk to you next time. Bye