y her own account, Lola Dada-Olley has lived with autism in some way, shape, or form for more than three-quarters of her life.
Her baby brother was diagnosed with the developmental disorder at the age of three in 1989, a time when intensive behavior therapy was just beginning to show promise as a treatment. Then 24 years later as a mother herself, Dada-Olley’s son, in what she described as a “déjà vu moment,” was diagnosed with autism spectrum disorder in 2013—shortly before his third birthday.
Her daughter would receive the same diagnosis the following year.
“Getting an autism (or any special needs related) diagnosis is akin to being drafted into the special forces unit of motherhood,” said Dada-Olley, a Nigerian American attorney who lives in Plano, Texas with her husband and two children. “You quickly realize that you have to go through specialized training within that army of motherhood to make sure that you are doing all you can. The training can be grueling at times, just like with all children, but it is worth it.”
On her newly launched podcast, Not Your Mama’s Autism (NYMA), Dada-Olley shares inspiration, hard-won lessons, and insights from her family’s multigenerational journey with autism. The podcast contrasts her parents’ experiences with her own but also explores how caring for her baby brother as a young girl offered a roadmap for navigating her own experiences as a working mother of two children on the spectrum.
[email protected] recently spoke with Dada-Olley to discuss NYMA and what she hopes all parents—not just those raising children with special needs—take away from her story. What follows is an edited transcript.
What inspired you to launch this podcast?
I’ve always wanted to tell stories. I jokingly call myself a repressed storyteller. Last fall, the city of Plano, Texas and Liberty Mutual Insurance partnered to build an all-abilities playground. I was asked to give a speech and I spoke about what the playground meant to me, not only as a mother of two children on the spectrum, but as a big sister and how I wished that I had this park 30 years ago. And once I gave the speech, I started thinking to myself, “This can easily be a podcast.” One of my 2020 goals was to finally launch this podcast, but I think the pandemic really brought home the fact that tomorrow is not guaranteed, and if I don’t do it now, then when?
Where did the name for the podcast come from?
I told a close friend major parts of my story and said, “My mom dealt with these challenges and now I’m dealing with these challenges, but in a different generation.” I trailed off and she said, “Well, I guess, you know what your calling is now.” I hung up the phone and I said to myself, “This is not your mama’s autism. You have these resources now. You have the all-abilities playground. You have social media. You don’t have to feel alone because there is an online community and if you put your message out there, naturally you’ll find other people.”
It’s not the same level of isolation that my mom and dad, unfortunately, had to go through.
In the promo trailer for Not Your Mama’s Autism, you mention the podcast “will go there” as you explore all these facets: multigenerational autism journey, marriage therapy, treatment approaches, the intersection of race and disability. What did you mean by that and why is it important to “go there”?
I jokingly say that Nigerian culture was Instagram before Instagram. We are a highly ambitious people. And sometimes we get so caught up in focusing on the highlights that we don’t let people know about the challenges in our lives. And that’s why I wanted to talk about how my husband and I are in a good place now, but couples with special needs children really have to take care of their marriages. Some studies show that there are higher instances of divorce in our situation versus other couples. Divorce rates are already high, but just making sure that self-care, marriage therapy, and self-awareness are at the center of your lifestyle.
“I jokingly say that Nigerian culture was Instagram before Instagram. We are a highly ambitious people. And sometimes we get so caught up in focusing on the highlights that we don’t let people know about the challenges in our lives.”
When I say, “I want to go there,” I want to talk about the realness of this. I feel sometimes, particularly on social media, it’s either you’re this warrior parent and there’s pressure to not show the negative. That’s one side of it. And then the other side is constantly talking about the negative and not talking about the positivity. So, I just want to strike that balance and go to the heart of an issue.
In a recent Instagram post you said, “Getting an autism (or any special needs related) diagnosis is akin to being drafted into the special forces unit of motherhood.” What advice would you give to parents and other caregivers who are raising kids with special needs?
Please allow yourself an adjustment period. Just don’t allow the period to go so long that you fall into denial. But it’s perfectly okay to sit in that adjustment period for a while and say, “Okay, I thought life was going to go this way and now it’s going a different way and how do I realistically adjust to that?” I think it’s necessary in order for one to move forward.
If you skip this phase too quickly, it will still come back and bite you. It’s very smart to acknowledge your feelings in that moment and in that phase of life. Some parents call it a grieving period. Some people call it an adjustment period. It really just depends on what your expectations were.
“This is something I suggest to parents in our situation: you can cry. Our pastor at church calls it leading while bleeding. You can bleed, it’s okay, but just keep moving forward.”
But it’s really important to understand how your life is changing. There are some days where you’re angry with the world, and you’re angry with God. You really start to look at your life and realize the challenges your child may have in the future if you’re not around. Your mind can just go down this rabbit hole and that is normal. That just makes you human and it’s okay. But the goal is not to wallow in it to the point where you lose the realization that you have to be your child’s strongest advocate.
I would say, “Please give yourself grace, and then from there, get the research going, figure out what you need to do.” There’ll be a lot of trial and error. What may work for one baby with this diagnosis may not work for your baby and that’s fine. It’s a lot of trial and error. It goes back to giving yourself and your family grace.
What do you think is the biggest misconception about raising an autistic child? Were there any cultural misperceptions that you or your family had to deal with?
We touch upon this a little bit in one of our podcast episodes. So, I’m a Nigerian American, meaning I’m an American, I was born and raised here, but both of my parents are Nigerian. My husband is Nigerian American in a different way. He came over to the United States in his twenties and was born and raised in Nigeria. He hadn’t really ever intimately sat down with another family who had a child with special needs, the entire time he was in Nigeria. And just numbers-wise, that doesn’t make sense. That’s impossible. So culturally, it tends to be a situation, at least back then, where the child would be hidden or taken to maybe a facility or not taken out to events or parties. It’s almost like, “Don’t air our family challenges publicly.”
In America, obviously, it’s a little bit more open, but even now you hear of really unfortunate stories of kids having birthday parties and kids not showing up because of the parents. I don’t know if they think that they’ll catch autism, I’m not sure. And that is heartbreaking. So, I think universally, we still have a lot of work to do, but America is a little bit further along when it comes to diversity and inclusion, when it comes to the special needs community.
“I want to help put people who don’t have family members with special needs in my shoes, so that they can better understand and perhaps have more compassion, sympathy, and empathy.”
When I saw the all-abilities playground and the sensory-friendly playground equipment in Plano, I just cried because I have two places now in the city where my children can go. Of course, this was before COVID-19. But my kids could go to this playground and not be judged because this is the all-abilities playground. People will expect to see children of all abilities there. My son, when the playground was built, literally said, “This is the greatest day of my life.”
And, of course, I cried again. I jokingly called the year of his diagnosis, the Year of the Tear. This is something I suggest to parents in our situation: you can cry. Our pastor at church calls it leading while bleeding. You can bleed, it’s okay, but just keep moving forward. You can cry some days and be like, “Okay, why did she have this meltdown? I thought we did everything we could. Why am I not reaching her? Why is she frustrated when she’s trying to communicate with me? What am I doing wrong as a mother?” You can cry that day, but just keep moving forward. Keep taking your children to whatever therapy is effective for them.
With every decision, you make in every child’s life, but particularly children with special needs, keep an eye towards knowing that you have to look at them as the 18-year-old version of themselves, the 22-year-old version of themselves. What can I do today to allow them to be the best versions of themselves as adults? Because the truth is, society is a lot more forgiving of a special needs child. But once they turn into adults, it’s a different story.
What do you want listeners to take away from your podcast?
I want them to give them one more example of not being able to judge a book by its cover. Sometimes layers have layers. I want people who have loved ones with special needs to know they’re not alone. I want to help put people who don’t have family members with special needs in my shoes, in similarly situated people’s shoes, so that they can better understand and perhaps have more compassion, sympathy, and empathy. So maybe that woman in the grocery store, when she sees a child having a meltdown, she won’t feel the need to walk up to that mother or father and give them a lecture on how they should raise their kids. Perhaps she can understand and can give that complete stranger grace.
If my little podcast can do that for one person, I will consider that a victory.
— An edited transcript published September 7, 2020
— Feature image courtesy of Liberty Mutual Insurance