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Autism Special Needs Uncategorized

54: Multigenerational Autism | Lola Dada-Olley

Summary:

Lola Dada-Olley‘s adult brother and two kids are on the autism spectrum. Lola shares how she went through parentification as a child. She draws on those difficult experiences as the “blueprint” for the mom she is today. Despite all of life’s challenges, Lola faces every day with joy and resilience.

Quotes:
  • “He has both autism and intellectual disability, but he enjoys life. He’s on e of the happiest people you will ever meet. I mean, the authenticity that he just cloaks himself in every day it’s just, it’s really beautiful.” – Lola Dada-Olley
  • “Learn that this moment is important. The present moment we’re in is important.” – Lola Dada-Olley
  • “Now that I’m older and the benefit of hindsight, I think what I went through was something called parentification. So I grew up to become the third parent in the household.” – Lola Dada-Olley
  • “Denial over a long period of time is the enemy of progress, not just for your family, for your child, for the future community around them.” – Lola Dada-Olley
  • “Resilience, I believe now, is a muscle that must be trained over time.” – Lola Dada-Olley
  • “If you live life too much in the ideal and not in the present, you miss out on everything in between.” – Lola Dada-Olley
Highlights:
  • 1:23 – Growing up around autism
  • 5:37 – Learning from a brother with autism
  • 8:13 – Being a mom to two autistic kids
  • 14:12 – Having resilience
  • 17:46 – Encouragement for those who are struggling
  • 20:50 – Get in touch with Lola
View Full Transcript

[00:00:00] Mothers of Misfits: Welcome to the Mothers of Misfits podcast. Join me for conversations about how to advocate for our kids in a one size fits all world. Be sure to subscribe, so you never miss an episode.

[00:00:17] Emily Melious: Welcome back everyone to the Mothers of Misfits podcast. Really glad you’re joining us again today. We have Lola Dada-Olley with us. She is an in-house counsel with a major bank, mom of two kiddos on the autism spectrum, she’s involved in regional nonprofits dedicated to families with special needs, and she’s also a podcast host of the Not Your Mama’s Autism.

[00:00:43] Not Your Mama’s Autism gives a peek into one family’s autism journey through a multigenerational and multicultural lens. Lola, thanks for coming on.

[00:00:53] Lola Dada-Olley: Thank you so much for having me. Happy Friday!

[00:00:56] Emily Melious: Yes, happy Friday. Everybody listening is gonna to hear this on a Tuesday, so also happy Tuesday. But I have a feeling with your personality, every day is a cheerful day. Honestly, this is the first time that Lola and I are actually seeing each other and talking to each other, but there is just something about you that is bright and your laugh, it’s contagious. So I know we’re going to have an amazing conversation today.

[00:01:19] Lola Dada-Olley: Looking forward to it.

[00:01:21] Emily Melious: Yeah. Yeah, so let’s start with your childhood because your younger brother was diagnosed with autism when you both were kids I understand. So talk to us about that. What was it like having a sibling with autism?

[00:01:40] Lola Dada-Olley: So, let me paint a picture. So we’re talking late eighties. I was nine, my baby brother was three. And back then it was like, it’s nothing like it is now. It’s nothing like it is now. It’s almost like autism back then was almost a death sentence in a way. What was communicated at my parents was, okay, you have this kid and he could end up being a genius, he could end up going down the completely different end and figure it out. We were in a great school district. He did have speech and occupational therapy but, he didn’t have ABA, you know there wasn’t any insurance backed coverage like there is now. My parents really were left to their own devices. Very, very different situation.

[00:02:30] Emily Melious: Yeah, I’d love to talk to them. They’re basically the all stars of what this podcast is all about, which is how we are on the front lines, advocating for our kids and their needs and helping the world to see what they’re capable of. Not just what causes them to be different, or how those differences are actually beautiful and meaningful. So I admire already just their bravery, their persistence, their resilience. We’re going to talk about resilience a bit later, I know that word’s really meaningful to you. Tell us where he is today, I mean fast forward, how’s he doing?

[00:03:06] Lola Dada-Olley: Sure, he is now in his early thirties. He is right outside Chicago with my parents, and despite all my parents have gone through, what my siblings and I have gone through, I consider him my greatest teacher.  So he lives with them, and my other brother and I have a succession plan because my parents are getting older now, and eventually he’ll come to live with either me or my other brother.

[00:03:34] And we really do take life one day at a time. He’s still non-verbal. Medical experts will tell you he has the mind of a toddler. So he has both autism and intellectual disability, but he enjoys life. He’s one of the happiest people you will ever meet. I mean, the authenticity that he just cloaks himself in every day it’s just, it’s really beautiful.

[00:03:58] Emily Melious: What’s one of the greatest lessons you’ve learned from him?

[00:04:02] Lola Dada-Olley: Take what is given, is one of them. And by that I mean, meet people where they are. I mean, my brother will greet you regardless. And he does realize that sometimes people don’t quite know how to react to him, but he’s still authentically himself. So he taught me that from a young age to definitely still be yourself, but work on as much as you can when you interact with others, particularly those that did not live this life, how to educate along the way for those willing to learn. That’s a whole other podcast girl. 

[00:04:42] Emily Melious: Fair enough, we can only fight one world challenge in a day. So we’ll accomplish that one tomorrow.

[00:04:51] Lola Dada-Olley: Indeed indeed, but that’s definitely one of the lessons. Another one is just mindfulness.    It’s something I had to keep learning over time, but every time I feel like my five-year plans had five-year plans, I would have an encounter with my brother that would remind me to just learn that this moment is important. The present moment we’re in is important.

[00:05:12] Emily Melious: Those are amazing lessons. And sometimes it does kind of smack us in the face, cause we’re living our life, doing our thing, and then we see these folks that have that different perspective and it’s really sobering. And it really brings to the forefront what is actually most important. And they’re not caught up in all that other craziness, that for us is all consuming at times. I’m assuming that you had to learn hard lessons fast as a kid, and you also probably developed quite a lot of protectiveness for him. How did that impact your childhood from your perspective, seeing what he went through and struggled with?

[00:05:56] Lola Dada-Olley: Where do I begin?   With siblings of children with special needs, now there are support groups, which is great, but during my time there weren’t. So now that I’m older and the benefit of hindsight, I think what I went through with something called parentification. So I grew up to become the third parent in the household.

[00:06:20] So what did that look like? A 12 year old was following her parents to attend IEP meetings, taking notes, bringing it back home to be his therapist, on top of just trying to be a kid. So I was older, in some ways, before my time.  That’s one. And there was a huge weight on me, and I don’t think my parents put it there I just felt it, because when you watch your parents go through a grieving process while the child is still alive, it puts a lot of pressure on the children who, quote unquote ended up okay, to not just succeed but excel.

[00:07:04] Emily Melious: Wow. I didn’t think about it like that, but as you say it it makes complete sense. Wow, is that something you still feel?

[00:07:14] Lola Dada-Olley: It’s something I had to work through. Growing up, I was a true type A personality. I have multiple degrees, I have multiple certifications, I’m that type of person. I’m a type A, but now I joke and say, I’m a B-plus. So, I’m learning to give myself more grace because when you grow up in my situation, perfectionism is almost your friend. And you don’t really want to bring problems to your parents, even though you’re quite young, it’s not like you have the coping mechanisms yet.

[00:07:49] But you try not to bring too many issues to them because you know what they’re dealing with. So that took years of unpacking to be quite honest. And then right when I felt I got the hang of this life thing, I got a double autism diagnosis as a mom.

[00:08:06] Emily Melious: Yeah. So let’s unpack that. Let’s start with first, how did your experiences with your brother help you being a mom to two autistic kiddos?

[00:08:20] Lola Dada-Olley: One of my first episodes in my podcast is called In the Beginning, The Blueprint. My brother is truly the blueprint. I think I didn’t have, and this is not judgemental, my friends who have never experienced this through a multi-generational lens, they tend to have this phase of denial. I never had that because I never had that benefit of thinking it could be something else, if that makes sense. The moment I started seeing signs, I thought, hmm this could be. Okay, let’s look at it more, let’s see, and then let’s go to the medical experts and confirm. Where some of my friends kind of like, oh no it couldn’t be that, I haven’t seen anything like this in my family. And denial over a long period of time is the enemy of progress, not just for your family, for your child, for the future community around them.

[00:09:22] Emily Melious: What a powerful statement. Absolutely, and you didn’t have to go through that grieving process because it was something you already experienced in some form. So you could be honest about the reality you were facing immediately, and make progress to your point.

[00:09:38] Lola Dada-Olley: So that’s a funny thing. I still grieved, but it was more of, even though I had conducted research, or my brother over time not realizing that the research would not be applied to my future children.  With them, the way I grieve was I remembered the helplessness of my parents.  And therapy helped me to see that because with both diagnoses, like in the moment, I cried and it was a guttural cry.

[00:10:06] And as I cried, I had images of both my brother and my parents’ reaction, just different images from childhood  mixed with what I was experiencing now. So it was more of my parents were so helpless. Is-this-going-to-be-me-too type of grief, if that makes sense.

[00:10:26] Emily Melious: It does. And do you feel that way? As you’ve referenced, there’s so much more understanding, I would say awareness, even though we have progress to make. There’s resources, there’s communities, there’s support. Do you feel that you are in your parents’ shoes and reliving their helplessness?

[00:10:46] Lola Dada-Olley: Not the helplessness. I do feel a bit of déjà vu sometimes, reliving behaviors, but now as a mom and not as sibling, because they get some behaviors from uncle, right? They get some behaviors from uncle. But having that multi-generational lens, the way I can cope and the way in which I approach community is different because of lessons learned decades earlier.

[00:11:13] For instance, we have something called the Alero test. Alero is the name of our baby girl, and she’s more impacted by autism. She needs more community supports. So in my parents’ day, we would have people who would publicly shun us because we had my baby brother, it was a different time. Now, although people won’t overtly say mean things, they still may not be comfortable.

[00:11:40] So the awareness is there. We still need to move from awareness to full acceptance, and God’s grace we’ll get there. But I call it the Alero test, so when we’re, quote, trying out a new family friend, we will bring her over, and this is of course pre-COVID, bring her over and see how they interact with her.

[00:11:58] So if they treat her human first and neuro-diverse second, you pass the Alero test. So that’s an example of how I’ve taken a past experience, and now I’ve kind of push that needle forward a bit.

[00:12:15] Emily Melious: Give us a specific example of what that looks like, to treat her as a human first.

[00:12:23] Lola Dada-Olley: So a really good example are some friends we have who live in a neighboring suburb, and they have three children. And before her, I don’t think they’ve ever played with neuro-diverse kids or at least knowingly did. So, her play is very limited, especially at that time she was younger, but they did realize she loved jumping.

[00:12:43] So they made it a point to create a game around jumping so that she could be included just on their own without anybody telling them. And the mom and dad to those wonderful children, saw that my husband and I were overwhelmed and took both children overnight with their kids to take care of them.

[00:13:05] And that’s a huge deal because my older child presents more neuro-typical. So people love, they’re like oh I’ll take, I’ll take fella. Like, okay, well I have two children.

[00:13:17] Emily Melious: Yeah, package deal.

[00:13:20] Lola Dada-Olley: But, this was one of the first families who said, yeah just drop them both off, we know you’re overwhelmed, we see you guys are doing so much whether we’re balancing jobs and multiple therapies and, you know how it is.   So that was beyond passing the Alero test. That was like, summa cum laude, you know?

[00:13:39] Emily Melious: That’s love. That’s loving one another. That’s carrying each other’s burdens. That’s understanding. Oh I mean, that’s a perfect neighbor and friend. That’s amazing, and hopefully one day, and I’m sure you will, you’ll get to return the favor when they’re needing it the most too.

[00:13:57] Lola Dada-Olley: Yup. And we have, it’s a definitely a yin and yang, but just being willing to because, this journey is not easy. This journey is not easy.

[00:14:05] Emily Melious: Not for the faint of heart. That’s for sure.

[00:14:08] Lola Dada-Olley: Exactly. So having helpers along the way, I mean that’s true community.

[00:14:12] Emily Melious: On the note of this being not for the faint of heart, let’s talk about resilience. That word means a lot to you. Talk to us about that. When you think of resilience, what do you think about?

[00:14:26] Lola Dada-Olley: I think of muscles. And let me explain further. So resilience, I believe now is a muscle that must be trained over time. And resilience is interesting because the resilience you need at the beginning of that weight training session is different from the resilience later. So it’s the previous experiences that build up to the next set of experiences. For me to have the mindset that I have, having three close family members on the spectrum, knowing that one day as I’m elderly I might be taking care of all three individuals. I needed that resilience from age nine to now, because I see things very differently. Like I truly take joy in what other people would say are the most boring things, because they don’t have my same mindset.

[00:15:22] Emily Melious: Yeah, give us some examples of those things that you take joy in that others might overlook.

[00:15:27] Lola Dada-Olley: Yeah, so Valentine’s day is coming up as a good example. With COVID, we used to have this great network of caretakers and now it’s much more limited. I mean, we literally only use the one right now that’s vaccinated. And she’s wonderful, but God bless her, but she’s not available this weekend. We wanted to just, you know, have a Valentine’s day.

[00:15:47] But like, you know what? Let’s order out from our favorite Italian spot, drink some wine, put the kids to bed early, and watch Netflix. And I’m really looking forward to, even though to other people it would just be boring, but I truly have learned through some very significant life events, that tomorrow is not promised.

[00:16:06] So I’m trying very hard in the present. Like what can I enjoy right now in the present? So that’s how I view life.

[00:16:15] Emily Melious: I love that. It’s the simple pleasures, and finding joy even in the mundane.

[00:16:22] Lola Dada-Olley: Yes. Yeah, especially now I think with COVID, you absolutely have to, because if you live life too much in the ideal and not in the present, you miss out on everything in between.

[00:16:36] Emily Melious: Absolutely. And I really do like that you talk about it as a muscle, because it’s something we have to work at. And if we don’t practice finding the joy and being resilient, then that muscle atrophies, and it gets harder and harder to come back from that. It’s really these little steps, baby steps, that five minute exercise every day, that builds to that muscle.

[00:17:03] That gives us strength, greater strength, when we need it over time. And it  makes me think too of endurance.

[00:17:09] Lola Dada-Olley: Exactly. Yes, the moment you get that autism diagnosis. This is not something that’s going to magically go away at age 21 or something like that. It is a life long mindset, and a life long journey that you have to get in your mind and understand and learn. Like okay, this is how my baby girl looks at age seven, for instance. How will she look at 17? How will she look at 37?

[00:17:41] Emily Melious: I love that you say nothing you have been through is wasted. So Lola, for those that are listening, that are going through a tough time, and they’re struggling to build up the resilience and the endurance, and they’re struggling to find the good in what they’re experiencing right now, what encouragement do you have for them?

[00:18:04] Lola Dada-Olley: I used to say pre-pandemic, one day at a time. Then at the beginning of the pandemic, I said one hour at a time. And now I say five minutes at a time. I think if more of us break down our day, like next minute or two, I know I can give myself some deep breaths. I know I can check out a TV show and just momentarily runaway in my mind.

[00:18:33] I think if we break down the complexity of life sometimes into manageable chunks, that can help. I ended up leaving the workforce for about four years. If I sat down when I first left the workforce, and thought about 10 years ahead, and how much, quote, catching up I would need to do, I would’ve lost my mind. But instead, I found what I could in the every day. So a good example of what I did, there was a point in my life where I managed 70 plus therapy hours amongst two children, in Madison, Wisconsin. So ABA, speech, OT, PT. My husband was full-time MBA program. A lot of it fell on me.

[00:19:20] So what I would do, there were breaks in my schedule all day, no joke, that would be 30 minutes. Also be very observant with the opportunities that are around you. Sometimes you get so bogged down in the immensity of the challenge, that you don’t see the glimmers of light.  So for me, that glimmer of light in Madison, Wisconsin driving around two babies under the age of four running around was, I saw gym right next door to my kids’ ABA center that I hadn’t seen before.

[00:19:52] I would literally go in and do kickboxing. And I called it kickboxing bad autistic behavior. And I would go in and kickbox for 20 minutes. I know I had 30 minutes. I would go in, and I would start looking forward to those 20 minutes. And before looked up, three months had passed, six months had passed, nine months had passed.

[00:20:16] And that’s how I learned over time and I still am learning, but that’s how I’m learning to get through life.

[00:20:24] Emily Melious: Yeah.   Lola, I feel like we all just attended the best motivational speech we’ve ever been to. I can’t say how much I admire you. I’m sure we’re all feeling the same thing is, you see beauty even in pain. That’s remarkable. And thank you for sharing with us, how we can do the same thing. So before we go, Lola, how can the listeners get in touch with you?

[00:20:55] Lola Dada-Olley: Sure. Our website is notyourmamasautism.com, and you could follow us on Instagram @notyourmamasautism.

[00:21:06] Emily Melious: And where can they catch the podcast?

[00:21:08] Lola Dada-Olley: They could catch it on the website, they could also catch it on all major podcast platforms. So Google, Apple, Stitcher, Spotify, what have you. We’re on all of them.

[00:21:18] Emily Melious: Perfect, thank you again for your time and wisdom and encouragement today.

[00:21:23] Lola Dada-Olley: Thank you so, so much. It’s been a pleasure. Happy Tuesday!

[00:21:28] Emily Melious: Happy Tuesday.

[00:21:30] Mothers of Misfits: Thanks for joining us for this episode of the Mothers of Misfits podcast. Make sure to subscribe, so you never miss an episode. We also invite you to visit us at MothersOfMisfits.com.

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