Global Autism Project – Supporting families with autism in Ukraine with Molly Ola Pinney

Transcript for Podcast Episode: 183
Global Autism Project - Supporting Families with Autism in Ukraine with Molly Ola Pinney
Hosted by: Dr. Mary Barbera
Guest: Molly Ola Pinney

Mary: You're listening to the Turn Autism Around podcast episode number 183. Today I have a special guest, Molly Ola Pinney, who is the founder and CEO of the Global Autism Project. Molly was previously on episode number 67, talking about what happened with the Global Autism Project once COVID hit and the world shut down. She is back on the show. This is actually something we haven't done for a long, long time is we streamed this interview directly to Facebook live on MaryBarbera.com/Facebook because Molly is in a hurry to get the word out about the needs of Ukrainian families with kids with autism who are either in Ukraine or have migrated over to Poland. There's extensive needs and some of the issues that families face around the world. So let's get to this important interview with Molly Ola today.

Narrator: Welcome to the Turn Autism Around podcast for both parents and professionals in the autism world who want to turn things around, be less stressed and lead happier lives. And now your host, autism mom, behavior analyst and bestselling author, Dr. Mary Barbera.

Mary: We are going to talk all about Ukrainian families struggling with children with autism, in addition to struggling with the devastation of the war and immigrating to Poland. For many families, staying in Ukraine, for many families. And Molly can tell us all about that. And she's actually visited Poland recently, and she's on the ground helping families. So I really want to applaud your efforts, Molly, for getting the word out.

Molly: Thank you. And thanks so much for having me. I know I've been messaging people saying like, hey, I know you have a production schedule and everything, but I have to talk right now to as many people as possible.

Mary: Right. Which is awesome. So, okay, Molly, you have been on the Turn Autism Around podcast once before and that was when 2020 hit and it was very early 2020 after the world shut down. And that is podcast number 67. We're going to link that in the show notes. But you know, so those of you that really want to know about your background can go to that podcast and listen because you have a really extraordinary background. But can you catch up our listeners,like how did you fall into the autism world?

Molly: Well, that's exactly how... I fell into the autism world. So I was back about almost 20 years ago, actually 20 years ago now. I took a job working as what was called at the time, and ABA therapist working with this kid. I had initially been hired to babysit him while his mom went to look for other schools because he had been kicked out of a classroom in which there was a pretty high ratio of teachers to students. But as a six year old, they kicked him out of the classroom. And so I was initially babysitting him. And then his parents asked me if I would like to be trained as this thing called an ABA therapist? And I said, Well, you may be. I really like this kid. You know, it was really fun. And then after that, his family actually invited me to move to Ghana with them where they were relocating, and it was there that the Global Autism Project was born. People started coming to my house looking for the lady who knew what autism was. And I, I suppose I had a general idea of what autism was at the time, although really, I, I'd worked with very few kids. I was very new in the field, you know. So I went online to try to find training for the folks in Ghana who were coming to me. And what I found were other people around the world also looking for services, for training. And so at the age of 23, I started this thing called the Global Autism Project, and that was 19 years ago now.

Mary: Wow. Wow. So before 2020, you were coordinating fundraising and kind of boots on the ground in multiple countries to send therapists who would donate their time and raise the funding to go over and help families in multiple countries start better programing for kids, better care for kids, and decrease the maltreatment of children with autism in other countries. And then when 2020 hit, it was like a massive cut to funding, cut all the trips, all the all the resources and kind of put you into a tailspin. So I'm sure there's a whole lot that happened in the last two years in terms of what you're doing. But we really want to focus this episode on Ukraine and the war and. You know, the war hit a few months ago. And, you know, this podcast is going to be broadcast in early July. So, I mean, we're assuming the war is still going to be going on in some fashion, but it really illustrates that all around the world there are needs, including in the United States, of families and children with autism. And you do have a link and the link is.

Ukraine Autism Relief

Molly: Ukraineautismrelief.com will redirect to our website, which is Global Autism Project dot org.

Mary: Okay. So Ukraineautismrelief.com and it'll redirect right to global autism and there is where you can make a donation. So I kind of want to put that out there a couple of times.

Molly: Yeah. Yeah. You can type in the comments as we go today.

Mary: Yeah. Yeah. So. So why don't you tell us about Ukraine and just some of the devastation that you're seeing?

Molly: Yeah. So I just want to say, I know this is airing in July. And, you know, I think the biggest takeaway I had from our trip in Poland is when this war is over, it is not over for these families. They are not about the ones who have left, are not about to go back home. Some of them have come from very badly devastated areas. You know, the past two years of the global autism project, to your point, we sort of lost everything that we did overnight. We lost the opportunity to travel there for our opportunity to fundraise and everything kind of disappeared in the night very quickly, as it did for a lot of organizations. And what that really did, though, is it gave us an opportunity to look at, okay, we've lost the what, we've lost the how, we've not lost the why. The why of this organization endures. The why of this organization, the why. Because kids all over the world, no matter where they live, should have access to reach their potential. Families should feel supported and never alone and desperate. And so as we started learning more about what was happening for families in Ukraine, we went right back to that. Why? Why like no one to feel alone and desperate right now. That's why this organization exists, so that when a family has a child with autism, no matter what's happening around them, they're not feeling alone, desperate, because they know there's a world of support and a community out there. It's something that we tend to take for granted in the U.S.. You know, there's this and it wasn't years ago, I don't have to tell you, but there is now a fairly substantial community and that just doesn't exist everywhere in the world. So as you said a week ago, I was I think a week ago, yes, I was in Poland. The way that I ended up in Poland is I found an article written in Spectrum News. Someone forwarded it to me and the subject line said We should feel really grateful. Look at what's happening around the world. I was the founder and CEO of the Global Autism Project. I don't go like, Oh, hey, we should feel really grateful. And, you know, we didn't mean anything by it. That's not how I'm going to read this, man. So I went to the Facebook group that was linked in the article, and there I posted, I'm the founder and CEO of the Global Autism Project. What's needed? What's happening? I've been thinking about you since the days I've seen the first videos of evacuation, and within a couple of hours there were hundreds of comments. My Facebook Messenger inbox was like blowing up. People have found me on LinkedIn. They were emailing me, they found the website, you know, and I was like, Oh, my goodness. Like, this is little more than I even imagined. What happened in terms of the level of the number of people we're talking to right now. So through these groups, I found this incredible group of moms who had basically been just single handedly taking on getting families evacuated, finding families housing, getting supplies to families, whether it's sensory toys or diet needs or supplements or just just toys to play with. I mean, these moms have just taken this on. And so I connected with all these moms very quickly. And, you know, I asked the same question that I asked 20 years ago, like, where's the organization that's supporting this? Where does the organization that's training people around the world to work with kids with autism? Oh, it doesn't exist. Okay. Where is the organization that's supporting kids with autism in a crisis? Oh, it doesn't exist. Okay. You know, and so it's like I think that's the Global Autism Project. And so within just a couple, I think it was like within ten days we were on the ground in Poland because the most important piece of this organization is that we do with and not for. We work globally. We don't think we know what's best globally. We think that there's a lot of passion, a lot of dedication and a lot of talent. And we know that the local community knows what they need. And so we went there specifically to talk with families and to learn, I would say, action creates clarity. It's like we went there being like, I think we're going to talk to some people.

Mary: Maybe we will.

Molly: Yeah. We ended up like going, okay, here's the plan. Here's how we're going to do this. Know. And we and it's a co-created plan. It's not just ours.

Mary: Yeah. And you had told me on the phone the other day that actually Ukraine did have some autism services before the war. Like they were, they were fairly sophisticated in some autism care and treatment. Is that true?

Molly: Yeah. And of course, like any country, right? Not everywhere. Most of the services were limited. It sounds like to major cities, but I've been pretty amazed, you know, that I've met quite a few families at this point, and so far none of them went to the same place and they all had pretty great services. It also sounds like the what parents had talked to us about last week is that their kids were actively engaged all day. They were swimming, they were going to different activities. There was a lot of stuff like that kind of around the needs of the kid, which I thought was.

Mary: Before the war.

Molly: Before the war, yeah.

Mary: And then everything shut down with the war, just like everything shut down for us with COVID. And that, you know, was a real struggle. But now we have, you know, a shutdown and terror and devastation and evacuations and all kinds of things. And you also spoke with families that remained in Ukraine.

The Reality of Evacuating Ukraine

Molly: We did. Yeah, we have. So I just want to just for a minute, because I don't know that we're all aware when we just watched the news. Right. The evacuation, I think on some level, I knew it was chaotic. Right. We can see that. We can see buses and trains. And I was like, oh, my gosh, where are the kids with autism?

Mary: Yeah, I was thinking the same thing, like, oh, my gosh, that must be so hard.

Molly: Right? And then I also knew that some families had left by private car. And I think in my mind, I sort of imagined like, well, if you left by private car, you just like got in your car and drove to Poland. Not that, you know, it's like a day and a half trip. No. That day and a half trip ended up being weeks for people. They could only drive during the day. In some places, in cases there are no more roads or they are blocked. And so families are kind of following each other through these fields with bombs around them. There's also minefields, these fields that they're driving through at this point. So it's extraordinarily dangerous. And if you're on a what should be a one day journey that's taking ten or 12 days, you're spending the night in these shelters. And, you know, they're fortunate to have these shelters, obviously. But I just we went through in a couple of these and you just have to imagine sort of like the biggest wedding tent you've ever seen. Right. And then inside of that wedding, ten is cots that are about probably five, six feet long and about maybe two feet wide. And they are next to each other, one after the other. And you just it's like this massive amount of space and there's maybe four or 500 people in the room and they don't turn the lights off at night for safety. They keep the lights on because you have four or 500 people sleeping right next to each other with their belongings. So that drive out of Ukraine, even though people were in their own personal cars, they couldn't drive at night because of the danger. And so and there was so much traffic and some people, you know, had their dog with them or their cat with them, or we met a family who had like a little lizard in a little, you know, little mini terrarium. You know, it's like this kid and his lizard. So. So the people who got out, you know, they've been through a tremendously, tremendously scary and stressful experience. And now you take a little kid who doesn't like to go a different way to school one day. When you think about the lockdown in the world stopping for us, it was like we went home, we baked the food we want to bake. You know, we were like, hey, this kind of works. I can't wait to relisten to that episode we did.

Mary: Yeah podcast 67. So MaryBarbera.com/67 to listen to the first podcast, which was in, you know, probably it came out in April of 2020. You were my first guest to really address the COVID issue back then. But you're right. I mean, you know, services stopped in a lot of cases, schools closed down a lot of cases and people were left. But like you said, they could still go into their bed and sleep and they still could be safe and not, you know, having devastation and horror all around them in on top of everything stopping. And I'm even thinking like, you know, Lucas is on a medication like that. He needs, you know, like, how would that work? You know, I know many of our children are very picky eaters, you know, and like.

Molly: Huge.

Mary: You know, used to certain like ways to school, like you said, or certain clothing. And that's like electricity with iPads. And, you know, I'm sure it's a huge, huge struggle. And yeah, in Ukraine, the men aren't allowed to leave. So a lot of times I'm assuming you met mostly women with their children, even with autistic children in Poland, is that correct?

Molly: Yeah. So what we've learned is that technically the men, if they have special needs children or three or more kids, they are technically allowed to leave. That being said many were not able to they were not able to produce the paperwork or they didn't know or what are you going to do, drive for 12 days to be left at the border, you know, so and then obviously they're fighting for their country. People also are making the decision to stay and, you know, support Ukraine. One of the things that I had not realize and I haven't heard anything about is there were a lot of Ukrainians living in Poland, and many of them were tradespeople. So about 70,000 Ukrainians returned to Ukraine at the start of the war, leaving construction projects half done so. Now we have this influx of millions of people. We have a huge need to build infrastructure and we can't create the infrastructure and the buildings because the contractors and the electricians and the plumbers have gone back to Ukraine. So there are so many layers to all of this and it just really is there's a complexity to it on top of just the practical day to day, but then the emotional experiences that these these kids are enduring, you know, being in a bomb shelter, you know, one kid who was totally fine with sounds before now if he hears any sharp sounds, he throws himself on the ground and tantrums. And that's from living in a bomb shelter for two months.

Mary: Yeah. And I'm assuming we probably don't know what the autism rate is in Ukraine, but if it's anything like the United States, that's one in 44. You know, it's a lot of kids. And those are kids with a diagnosis of autism. We also have lots of children with lots of other issues, medical issues, physical disability, emotional issues, and that. And even if you had a completely I don't need to know if there is anything such as a completely typical child, but even if you have typical children is, you know, post traumatic stress is got to be really a lifelong issue now. So okay, so it's good that we're talking about this. And there's, you know, when I have watched the news and see, you know, the devastation in Ukraine and the influx to Poland and, you know, so besides donating financial resources which is Ukraineautismrelief.com and that redirects to the Global Autism Project which has been around since 2003. That's the other thing is like people don't know where to donate money that it's going to actually get to a good place. You made the trip to Poland. You are a reputable you know, you've been an award winning fundraiser and organizer. So I really do. And that's one of the reasons I wanted to have you on, is because I do really trust that the money that people would donate, that I would donate, that people would donate for my world would get into the right hands. But besides donations of financial donations, is there anything else our listeners can do? I mean, we have listeners. We have. Participants in my programs from over 90 countries. So I have a really global audience here, but what can we do besides donating something?

What Global Autism Project is doing for Ukraine and Poland

Molly: And I do want to touch on exactly what the donations are going to as well. But, you know, one of the things we're going to be doing is we are going to be these. Well, I guess it all kind of goes together. So. So the donations are going to be used to actually help displaced Ukrainian therapists reopen their centers. So we've met some incredible therapists who had some amazing programs in Ukraine. And, you know, the idea of starting over from nothing is just really daunting and overwhelming. These are their businesses that they ran. This is their livelihood. They provide therapy for 60 to 80 kids at once, you know, and now and now those kids, by the way, are all over. Some are still in Ukraine. Some are in other parts of Europe, some are in the U.S. So we're going to actually be leasing the space and supporting these people and reopening their therapy centers. So reopening their therapy centers. And then, of course, we have to fill them with materials and tools and toys and all the fun things. And so that's one thing that we're doing. The other thing is, as I said, a lot of Ukrainian tradespeople have left Poland. So we are actually physically rehabbing some buildings that we're going to be able to use. So some underutilized or unused buildings. We're going to be doing that. And so that's where the donations go in terms of what you can do. Our skill core program is what we're going to be using to help provide the training and the actual support, the day to day support at these centers. And so you can learn more about that on our Web site, GlobalAutismProject.org. In the next couple of weeks, we'll have some of these Polish sites where you'll be working with both Polish and Ukrainian students. There is a shortage of services all over the world, and I knew our organization would be engaged somehow in supporting the autism families, families who have autistic loved ones. I did not know I hadn't quite realized that the shortage of services all over the world means that what we do best, which is build capacity for services, is actually a response to a humanitarian crisis right now. And so that's what we'll be doing and will be because there's a shortage of services already in Poland. These centers will employ Polish and Ukrainian teachers. This will be open for Polish and Ukrainian students. It's going to be very, very important throughout this process that Ukrainian and Polish families are forming relationships. They're neighbors now, you know.

Mary: And you also on your Website, I noticed you have some Ukrainian language. Are you also on that Ukraineautismrelief.com you're asking for donations in one button but you're also asking for Ukrainian families to connect with you that need services. So you're kind of like a matchmaker in terms of funding and service, is that correct?

Molly: We are. We're also currently in a partnership with Operation White Stork. We're also able to provide emergency 30 day housing vouchers to all of our families. And so that Ukrainian language says, you know, let us know what you need. Do you need housing? Through a partnership with Project Apollo, we're actually able to provide evacuation support. So families that were not able to leave on a train or bus, families that did not have a private car to leave. We have a partnership with a group that's bringing in private vehicles and able to get our families who want to leave and can leave out. You brought up the medications. One of the reasons that some people are in Ukraine still is because they don't have the medications to allow their loved one to relax enough to be able to do this drive.

Mary: Yeah.

Molly: So it's a very real, there's so many pieces of it now. Some families do want to stay. Some families have made the choice that this is Ukraine, or safe parts of Ukraine. And I want to say, obviously, we were in Poland, so the majority of people we talked to did not want to stay. But it's really it's a challenging thing. And I think it's easy for us to look and say, like, well, I won't stay or, you know, and it's like you actually don't know. You actually have no idea, you know, like when it tanks rolling down your street, then you can say, right.

Mary: Right. And everybody has different circumstances. They have to make their own choice when they have.

Molly: Elder family members who don't want to leave or can't leave and kids with autism, I mean, there's complexity to it for sure.

Mary: Yeah. Yeah. So I think you've given, you know, some great information out. It is kind of sad and depressing, but that's the reality of what's happening now. And we just have to support families in Ukraine, in Poland and around the world. Anybody, you know, can be suffering with crises and with hardships. So I think we'll wrap it up before I let you go. I also want to hear not just for the families in Ukraine or Poland, but all of us, how we want to reduce our stress and lead happier lives. So do you have any stress reduction tips or self-care tips that you can give to our listeners before we let you go?

Molly: You're talking with someone who's been working 20 hours a day. I'm like, Oh, do I? That's a funny question. Well, I fell asleep right before this meeting for a few minutes. So I think I'm good for a minute. You know, I think this really became just really important to us on this trip and with these families is really just taking time, taking a moment, feeling all that there is to feel. There is so much happening in the world right now. There's so much that's impact. You know, it's like we came back from Poland to the news of the buffalo shooting and it's just like, where does this even where does this even end you know, and I think, you know, we were supposed to be featured on NBC and then they said, oh, we actually have to focus on the Buffalo shootings. Sorry about that. It's like the news cycle is moving so quickly, everything is moving so quickly. And I think like, it's really easy to get distracted from one thing to the next. It's really easy to think that we can only focus on one thing. And, you know, I think really just like feeling it all and being with it has been really has been really important not only for our team but for some of the Ukrainian families that we met as well.

Mary: So yeah. Yeah. Well, thank you for your time coming and telling us about the needs of families in Ukraine and in Poland. And I wish you the best. Yeah. So thank you for your time and we will be praying for you and hopefully we'll be donating too to help your cause.

Molly: Thank you so much. You can also set up your own fundraising page on our website if you scroll all the way to the bottom so you can set up your own crowdfunding page.

Mary: Oh, nice. Okay. We'll check that out. All right. Thank you, Molly.

Molly: Thank you so much. Have a great day.

Mary: If you're a parent or an autism professional and enjoy listening to this podcast, you have to come check out my online course and community where we take all of this material and we apply it. You'll learn life changing strategies to get your child or clients to reach their fullest potential. Join me for a free online workshop at MaryBarbera.com/workshop where you can learn how to avoid common mistakes. You can see videos of me working with kids with and without autism. And you can learn more about joining my online course and community at a very special discount. Once again, go to MaryBarbera.com/workshop for all the details. I hope to see you there.