In this episode, Lola Dada-Olley and her husband Tosan discuss their journey with their daughter Alero, who is on the autism spectrum. They share their decision-making process regarding Alero's education, including the challenges of navigating special education services, the impact of the pandemic, and the importance of adaptability in parenting. They reflect on their choice to temporarily withdraw Alero from school for therapy and the subsequent decision to reintegrate her into a supportive school environment. The couple emphasizes the significance of building a supportive community and learning from others' experiences in similar situations.
Lola Dada-Olley (00:01.395)
Welcome, welcome everyone to the Not Your Mama's Autism podcast. I am back yet again with the hubster, the hubby, Tosa Ali. We are talking about a not so light topic about our daughter's reproductive healthcare and the decisions we are starting to make for her in hopes of
her living the highest quality of life possible. For those new to the podcast, we have an 11 -year -old daughter who's minimally verbal, on the autism spectrum, and intellectually disabled. So, this episode will walk through some traditionally seen as uncomfortable topics, things like periods, things like cramps.
things like talking it through as a family for a child who has communication challenges. This is naturally a difficult conversation, whether or not your child can traditionally communicate or not. So, our daughter has a history of some sensory challenges associated with the way her autism manifests. So, once she turned 10,
And we knew that that next phase was right around the corner. We had to really sit down and think about the type of options she would have, not only based on her autism, but quite frankly, based on her family history that we know of at least when it comes to reproductive health, our family on my side, at least part of my side of the family, we've had a history of fibroids, PCOS, difficult periods.
how could that potentially look in a growing child who will one day become a young woman who may not be able to communicate things like pain in a traditional way. So, we are pulling back the covers on this so you all could see some of the conversations my husband and I have had, some of the conversations we've had with her healthcare providers and hopes.
Lola Dada-Olley (02:24.707)
that we help other families like ours and not just those families but the health care providers that are part of those villages as well. So with that in mind, let's get started. So, this all started when she was 11 now, is it when she was nine going into 10 or maybe 10?
Tosan Olley (02:51.336)
Mm
Lola Dada-Olley (02:51.971)
talk about the endocrinologist. So, we did a blood test on Alero and we sat in her office and she told us that based on the blood tests, puberty is amongst us.
Tosan Olley (03:08.648)
I think we rewind a little bit. Yes, we did the blood test, but we went into that conversation with the endocrinologist with a little bit at the back of our head that one study showed that puberty seems to be hidden earlier.
And even though she was nine going on 10, it felt like, you know, this generation and the generation before and on, you every generation seems to be hidden a little bit earlier. We had noticed some changes in our body. We were trying to make the determination. it, you know, just chubby baby versus, you know, development?
Lola Dada-Olley (03:50.211)
Yeah.
Tosan Olley (04:00.93)
So we went in with a.
We think we need to confirm, we need your help, we need your input and what have you. So that when she came, when the chronologist came, it was less like, shock. was more like, it's true. know, puberty, know, baby girl is now.
Lola Dada-Olley (04:06.413)
Yeah. Yeah.
Lola Dada-Olley (04:26.935)
Yeah, puberty is among us.
Tosan Olley (04:34.22)
baby woman? Baby lady, not wife woman?
Lola Dada-Olley (04:36.191)
Gosh, baby, baby. No, baby, baby. Yeah, definitely not quite woman, but she's on the path. She's definitely on the path
Tosan Olley (04:46.439)
Yeah, and you know, my head, I had a thought in my head that half the fighters watching this just ran for the exit.
Lola Dada-Olley (04:57.845)
Yes, but it's definitely a topic that think dads need to be in on as well. It's really important.
Tosan Olley (05:04.782)
Yeah. And I also think that's, or maybe this is wishful thinking, but I think proven by the dads we have around us, you know, in our ecosystem that.
This is less taboo for our generation, I think, than it was, you know. Yeah.
Lola Dada-Olley (05:26.859)
Yeah, I'm hoping so and I think so because I remember when I had my first period I went to my dad because my mom was working she was at home and my dad literally said, you can tell this man it looked like a deer caught in headlights like just like no and he said go go and find your mother go and find your mother. Okay.
Tosan Olley (05:35.894)
You
Tosan Olley (05:48.238)
Yeah, so once the endocrinologist confirmed that at least biochemically.
she had achieved puberty. Physiologically, we knew it was just a matter of time for the body natural processes to begin. And in conversation with Endo, correct me if I'm wrong, she gave us the referral to the gynecologist that...
Lola Dada-Olley (06:25.143)
Yes, yes, yes, she did.
Tosan Olley (06:29.554)
was not just a pediatric gynecologist, but was a pediatric gynecologist that had specialization in kids on the spectral neurodivergence and on and on and the little nuances. Yeah.
Lola Dada-Olley (06:40.205)
Yes, all types of neurodivergence, including intellectually disabled girls, which was very, important to us.
Tosan Olley (06:52.576)
and not as common as we, you know, which is a topic for another podcast, why that skill set that would help newer diversion girls doesn't seem to be as common as I quite frankly should think it should be. So it's the ecosystem connecting to the next chain.
of command and connected to the next link on the tapestry of care that we sought to build. And as a dad, think my mindset was a bit of a...
Tosan Olley (07:42.51)
she's gonna grow fast, right? B, I need to get my workout on.
because I'm going to be bodyguard to this little lady for a little bit. So, I need to get my knees stronger and see, you know, the challenges of her physical care. You know, we've been doing this for a little bit for her. So, what's another bodily fluid added to the mix?
Lola Dada-Olley (08:23.738)
I remember the endo telling us, because you alluded to it, the endocrinologist telling us something to the effect of, well, it could happen anytime from now within the next two years, according to this blood test. And, you know, me being who I am, I was just like, OK, we got up to two years, could certainly be less.
Tosan Olley (08:34.337)
Mm -hmm.
Lola Dada-Olley (08:46.071)
thinking through what that can now look like when it comes to just overall prep care to get to that day. Thinking through, you know, with this child with this history of sensory challenges. So, we went to her ABA therapist, her occupational therapist, also her speech therapist saying that this is the beginning of the passing of the baton to this next phase of life. So, we know we have
Tosan Olley (08:49.548)
Mm -hmm.
Tosan Olley (09:06.158)
Mm -hmm.
Lola Dada-Olley (09:16.041)
a child who doesn't traditionally communicate so on our iPad let's really focus on how she can communicate pain and where that pain may be in a more targeted way just to get ready so she could be able to at least use her iPad and tell us pain and hopefully one day tell us pain in my stomach so we can know that there are menstrual cramps coming maybe and help us better serve her...
Tosan Olley (09:27.022)
Mm
Tosan Olley (09:41.218)
Mm -hmm.
Lola Dada-Olley (09:44.611)
So that would be the work of speech therapy and a mix of speech and ABA. For OT, it would just be starting to get her body ready to certain feelings down there, like when it comes to things touching. So, getting used to maxi pads, getting used to period panties, and just being okay with the feel of that, because it's a very different feel than her.
Tosan Olley (10:02.508)
Mm -hmm.
Lola Dada-Olley (10:12.887)
diapers or her underwear and reinforcing that, reinforcing personal hygiene now and thinking of this life change and thinking how it could affect her, just her body changing and just the sight of blood. We were worried about what that could mean for her. And so a lot of the next year was talking her through that.
Tosan Olley (10:17.347)
Reinforcing hygiene. Yeah.
Tosan Olley (10:32.866)
Mm -hmm.
Lola Dada-Olley (10:41.563)
providing her therapists with maxi pads and period panties and talking through with her caregiver therapist at home, pointing to the iPad, talking about pain, just so that she can get used to what the word for pain is and when it should be invoked more. We did that for a good year.
And then earlier this year, again in preparation for that, we went to the gynecologist to talk through, when that day comes, what does that now look like from a gynecological perspective based on the medical history we are aware of? And he helped us talk through some options.
Tosan Olley (11:34.408)
Yeah, and I think it's, you said it, you know, when we make decisions based on what we know, with the geographical financial constraints, and we did, we've run our lives that way for a long time, you know.
the kids that really forced that mindset. So that we're not caught unawares. We're not unprepared for what is in this case an eventuality. So, when we went to the gynecologist, the conversation was...
more.
here is what we are thinking, you know, based on our research, you know, based on history, based on family history, based on what we know of allelic sensory, baby girl sensory issues and, and what have you. Here's what we are thinking, here are the things we need to consider, here are the things we need to be aware of, we have no idea what our pain thresholds are like.
We can guess that they're not because of our sensory issues. Everything is magnified. So here's what we have as we do it, the full set of facts. Game plan for us. Help us walk through this. This is where we bring in an additional variable of the doctor's experience, specifically with
Tosan Olley (13:29.15)
children like ours to walk through exactly what we need to start putting in place if we had not thought about it. You know, one of the things I think that came out of this, maybe wrong, was not just the iPad of showing that she has pain, but being able to communicate something as vague as discomfort, right, or I'm sad.
Lola Dada-Olley (13:54.647)
Yes. Yes.
Tosan Olley (13:56.982)
You know something but in Vegas feelings if she can't or I need a break exactly so took that information, you he he gave us that information and essentially gave us the game plan and the game plan was You know a lot of things that we're already doing getting her used to
Lola Dada-Olley (14:01.023)
or I need a break.
Tosan Olley (14:25.778)
wearing the period panties even though there's no period so that when she eventually has to wear the period panties, it's not like, what is this, Embedding with each therapy provider stacks of female hygiene products, you know, like stock up for when the Clarion call goes out. Then everybody's like, go, go, go, go, go.
Lola Dada-Olley (14:44.819)
Yep.
Lola Dada-Olley (14:48.395)
When that time comes.
Tosan Olley (14:55.118)
know, military terms. And for him, he said, immediately it shows up.
Lola Dada-Olley (14:55.383)
Yep. Yep.
Tosan Olley (15:05.13)
And there are medical decisions that he had already put into her chart. So that when we actually called to get him, we got his nurse, know, a fast order, there we go. But it's all a, this is an eventuality.
Lola Dada-Olley (15:23.543)
you're fast forwarded, you're fast forwarded. You're fast forwarded.
Tosan Olley (15:34.188)
what does preparation look like so that when it's time to go, we are not at that point with those emotions. You do not want to be trying to figure out what's next at that point, know, figure it out where you are, quote unquote, clear headed. Because the emotions of it has come. It's a different ballgame.
Lola Dada-Olley (15:56.269)
emotions are very real. So as we talk to you as the proud parents of our baby girl, and I'm trying to say this without breaking down because Tosa talked about emotions, but this past week it happened. The day finally came and we got the eagle finally landed and I was at work and I got Tosa and I were both at work.
Tosan Olley (16:15.679)
eagle landed.
Lola Dada-Olley (16:25.439)
in the office, in the physical office, and we got two calls and quick succession from Alero's teacher. And then I tried to call her back and I just knew. The mother's intuition, I just knew, I just knew. And I instinctively went to the email and it was something cryptic like, there's an update regarding Alero, please call me back. And I forwarded it to Tosan and I was like, Tosan, it's happened. And he writes back.
Tosan Olley (16:49.942)
you
Tosan Olley (16:54.014)
Yeah. Literally. Literally. That was my two-word response. And right at that time, the teacher called me and she actually caught me. And she's like, Mr. Ali, I just wanted to let you know, Alero's period has come. And we changed her.
Lola Dada-Olley (16:55.441)
shit.
Lola Dada-Olley (17:02.187)
And this is... Yeah, that was a two -word response!
Lola Dada-Olley (17:20.606)
Oof.
Tosan Olley (17:22.52)
to because again, we embedded female hygiene products everywhere. We change into the period pants that you left. And I think I was actually about to walk into a meeting. Yes, I was about to headline a panel at work. And I, my mind was like, be damned. I literally told her I'm on my way.
Lola Dada-Olley (17:35.949)
You're about to be - a big panel! You're about to
Tosan Olley (17:52.426)
And she goes, no, no, no, no, we don't need you. We're just letting you know. Which back to the decisions we made as to the particular ISD and the majority of the teachers and the ecosystem that we chose, it's for so that very reason that the teacher can go, no, no, no, we don't need you. We got that. We just let you know. You know? And I...
Lola Dada-Olley (18:18.882)
Such a blessing, such a blessing.
Tosan Olley (18:20.972)
did my panel and everybody, nobody on that panel actually.
Lola Dada-Olley (18:23.147)
And nobody had any idea what we were experiencing. And the funny part is, as he was doing his panel, I was prepping for a major presentation at work, a major presentation. It just shows that life will always continue to life.
Tosan Olley (18:41.214)
Life doesn't ask for permission to life. So that was that auspicious day.
Lola Dada-Olley (18:44.585)
It really doesn't. It does not at all.
Lola Dada-Olley (18:54.763)
Yeah, so to land that plane though, so in the midst of these very busy careers and life, life being and our daughter, you know, moving and officially moving into this new phase. We were talked, we found a minute in the midst of I think you had finished your panel, then you finally called me because I was playing phone tag with the teachers. I didn't reach them yet. You called me to confirm.
Tosan Olley (19:17.432)
Correct.
Lola Dada-Olley (19:24.757)
And you said, our baby girl is not a baby anymore. okay. It's true, she's not.
Tosan Olley (19:29.504)
Hehehehehe
Tosan Olley (19:34.746)
And gave you also feedback that teacher was like, she's fine. She's laughing. She's giggling. She's happy. And she's okay. We'll see you when you come pick her up.
Lola Dada-Olley (19:48.804)
Yeah, yeah. And then we, and then you and I talked and I said, you know what, our plan is in place for a reason. Let's call the doctor, let him know what happened. And we implemented our plan, he added notes. And it's a reminder, and this is not political.
Tosan Olley (20:09.688)
Mm -hmm.
Lola Dada-Olley (20:14.531)
We don't want it to be the following statement I'm going to make here, but there are use cases for birth control and for other birth control devices where it has nothing to do with reducing pregnancy. It's literally to increase the quality of life of the patient separately from even thinking about things like pregnancy. I mean,
Our daughter is cognitively a toddler and physically a preteen girl. So, we have to look at things, looking through the eyes of parents who have to think about her long -term sensory needs to regulate her body chemistry in a way that can increase the quality of her life for the rest of
Tosan Olley (20:58.218)
to regulate her body chemistry. That's it.
Lola Dada-Olley (21:08.867)
because she's just starting this journey. It's 30, 40 year plus journey before she would even touch menopause. These are the type of decisions families like ours have to make. And without access to this, it can hurt her. It can stomp her development. And I'm not even talking physically, but mentally for her future too. People don't understand.
Tosan Olley (21:16.525)
Mm -hmm.
Tosan Olley (21:36.078)
Yeah, because for us, for her, rather...
Quite frankly, a lot of times with therapy is you're trying to create an environment that makes it most optimal for her to learn or to acquire. Let me use the word acquire, to acquire skills. And anything that distracts from her body's brain power, energy that would have been better served, acquiring those skills.
It's our job and the medical ecosystems jobs to mitigate, right? You know, there's a point in our life where high environmental allergies were off the chain and we again, we're blessed to be in position. We, if you remember, bought like air purifier filters for the classroom, right? You know, to.
trying to eliminate anything that would diminish her ability to acquire skills. So in this, clinical as this would sound, this case, the medical, what's the term for it? But the medical decisions and solutions that we talked through with her doctor was in order to ensure that a child that is not equipped on her own to deal with the sensory, physical, mental, emotional swings and whatever the case may be.
Lola Dada-Olley (23:23.719)
emotional
Tosan Olley (23:32.422)
and knowing that does not have the ability to acquire those skill sets before the time of the Eagle King, right? What can we do to come alongside her to make sure she's, if she is equipped or the environment is equipped to aid her in facing those challenges, because we are not going to be able to, you know, this is a challenge that
Nobody but her can bear. She's going to have to bear it. It's her body. So, it was gratifying seeing the results of decisions made a year or two ago from a medical perspective, from a school district perspective, almost a decade ago, it was gratifying seeing those. Exactly right, was gratifying seeing all of those kick in and go, OK, we act, you know, it played out as we thought it would play out.
Lola Dada-Olley (24:31.615)
a private therapy perspective as well.
Lola Dada-Olley (24:44.813)
so far.
Tosan Olley (24:45.846)
so far where we were making those, putting those decisions in place. And she is, as at the time of this recording, has weathered her first storm.
Lola Dada-Olley (24:50.317)
Yeah.
Lola Dada-Olley (25:03.137)
Yes, yes, yes. She has like a champion. And in fact, and even one time in school, she pointed to her stomach and told her teacher pain. And we think that was tied to the menstrual cramps. So, the fact she was even able to communicate that is just, it's such a blessing. It's such a win for our family. And you know, one day at a time, one day at a time.
Tosan Olley (25:17.09)
Yep.
Tosan Olley (25:21.102)
That's huge.
Tosan Olley (25:30.722)
Yeah, and we.
Tosan Olley (25:35.48)
This is not the end of the reproductive journey for her, right? Obviously. And we're in tight consultation with her medical ecosystem, tight consultation with her therapy ecosystem, with the school, with our faith -based community. We're in tight consultation with our...
Lola Dada-Olley (25:56.589)
Yes.
Tosan Olley (26:02.71)
I guess for lack of a better term, life mentors, folks who have a daughter who is years ahead of us, of ours, so that, we're not trying to recreate the wheel. A lot of this is, what did you do?
How did it turn out? It's not a guarantee that it will turn out exactly the same for our daughter, but it's information. It's counting the variables. Then we make a call. There you see how it pans out. Then something else shows up. You do the same process. You make a call. You see how it pans out. With the knowledge that this is a marathon, and we are going to be making, having to make those calls for
decades in order to.
Lola Dada-Olley (26:53.219)
Absolutely.
Tosan Olley (26:57.984)
set her up for the most optimal life that we can set her up for.
You know, I am officially the dad of what's the term, pubescent teenagers. If anyone is wondering why to create my beard has doubled. Ta -da!
Lola Dada-Olley (27:15.267)
Pray for us y'all, pray for us
Lola Dada-Olley (27:27.905)
You
Tosan Olley (27:34.498)
That's how it is.
Tosan Olley (27:41.154)
So.
And the other time, you know, the story continues, the story continues to unfold. But we celebrate.
The wind.
Tosan Olley (28:04.718)
her first storm was able to be weathered as well as it possibly could have been.
A due to the grace of the Lord Most High and medical ecosystem, medical planning, therapy planning, putting in the guardrails.
Tosan Olley (28:40.366)
Pre -decisioning. Pre -decisioning. Spending a lot of time in the pre -decisioning so that when the decisions needed to be made, it was a... duh. Like, you you just, you can move a little bit faster.
Lola Dada-Olley (28:42.667)
decisioning. Yes. Yes.
Tosan Olley (29:01.62)
And we, we, I'll look at what the journey continues.
Lola Dada-Olley (29:06.999)
Yes. Yes.
Tosan Olley (29:12.066)
Cool beans.
Lola Dada-Olley (29:13.827)
Until next time everyone.
