Our OGs are back! For the next few episodes, we're checking in with some of our original guests. When we spoke last year, Daniella struggled to help her parents understand her son's developmental delays. Since then, he has received an official diagnosis and is teaching the whole family how to support him best.
If you loved this episode, listen to Daniella's original episode, Mom Has to Teach Grandparents to Accept Her Son's Difference.
We’d love to hear your stories of triumph and frustration so send us a detailed voice memo to virginia@lwcstudios.com. You might be on a future episode! Let’s connect on Twitter and Instagram at @TalkToMamiPapi and email us at hello@talktomamipapi.com. And follow us on Apple Podcasts, Spotify and anywhere you listen to your favorite podcasts.
Juleyka Lantigua:
Hi, everybody. On the show, we've met so many caring first gens, who are trying to have hard conversations with their parents and family members. We've heard stories about divorce and coming out, about differences in parenting styles, about renegotiating gender norms and setting boundaries. Along the way, we've also heard from brilliant experts, who've shown us how to handle these intergenerational, often cross-cultural conversations more effectively, and with a little more grace.
For the next few episodes, we're inviting some of those first gens back for another installment of OG Check-ins, the occasional series where we speak to OGs, original guests, to find out how things have been going since we first spoke. Today, I'm checking in with OG Daniella. Daniella's episode first aired on November 30th, 2020. Here's a clip.
Daniella Clip: When I initially brought up that I thought my child might be exhibiting some signs of autism, that was just so devastating to my parents. And I'm thinking about it right now and I can feel myself even tearing up because it was very difficult for them to hear. They were telling me like, "Miha, don't be sad. Don't be this." And I'm like, "Guys, I'm not sad. You guys are the ones who are sad. So you need to admit that to yourselves. You need to admit that you are the ones who are sad. You have to work through that because we can't remain there."
Lantigua: When I first spoke with Daniella, her son was still too young to be officially diagnosed. And she and her husband were just beginning to figure out how to talk to her parents about the kinds of support he would need. For this OG Check-in, I wanted to speak with her about how things had changed as everyone became more aware and gained a better understanding of her son's differences. Since Daniella is speaking with us from her home, not a studio, you'll hear some background noise. Let's get into it.
Daniella: My name is Daniella Suárez Boyd. Last time that I was on the podcast, I was talking about how I was wrestling with my son's developmental delays and helping my family to comprehend that, helping them to understand that his differences are differences and that's it. And that he is still a happy, healthy, human being.
Lantigua: So, Daniella, when you heard your episode, what was your reaction?
Daniella: I couldn't believe that I have a platform that could potentially reach other parents going through the same thing or other families going through the same thing. And so it was joyful on my end. Also, scary to put it out there. You're kind of speaking your truth, you aren't holding anything back. And I was also a little scared to see how my parents would react once they heard it. I was a little hesitant to see how they would react.
Lantigua: So how did they react?
Daniella: They said that they were proud of me, that they're happy that I'm talking about my son's story and that they know that I am going to impact, and that he's going to impact a lot of people. And since then, I've had a lot of parents reach out to me. I've talked one on one to so many parents that are thinking about how to advocate for their child, how to speak about their child, what resources are out there for their child, how to talk to their families about it, their providers. And so it has created this beautiful community of people that love my son, that support my family in our journey, and then also for them to feel less alone. Because I know when I was first navigating this process, I felt very much alone.
Lantigua: First of all, I'm smiling so hard, for everybody who can't see me, because that just fills me with so much joy to know that you felt like talking to us gave you a platform. And that then that turned into you being able to support and guide other people. I want to ask you, because the last time that we talked, you said that your son was right on the cusp and maybe he was still too young to get an official quote, unquote diagnosis. So what's up with that.
Daniella: So he officially got diagnosed with autism in May of this year. And we had been trying to get some sort of a diagnosis since January. So it was when he turned two. So he does have a formal diagnosis. Even after the formal diagnosis, to be able to get him more occupational therapy and speech therapy was another uphill battle.
Lantigua: What was the resistance about?
Daniella: Insurance needs things done a certain way and they need certain terminologies and they need... You might have a diagnosis from a neurologist, but the neurologist didn't use this one test. And so in the process of getting this diagnosis, I also had my second child in May. So I-
Lantigua: Oh my God. Congratulations.
Daniella: Thank you. So we've had a lot of changes and we had to switch insurances. It's just been a massive insurances, which I think has been the most difficult part. And it makes me really sad for kids who really need support or who need like a speech therapist and they can't get it. And it's because you have to play the system.
Lantigua: We have a friend whose son, beautiful, brilliant boy, but also has sensory overload complications. And we often have this philosophical conversation with the parents about there's only so much you can anticipate, there's only so much you can prepare for. So what is the general philosophy that we as people who support and love your son should have? Do we let him sort of struggle with something until he figures it out? Do we try to put cushions around him all the time, metaphorically speaking? So have you had even enough time to think about, what's my philosophy about how my son should be engaging with his world?
Daniella: I definitely try and view the world from his eyes. And what I see is I see so much creativity and so much curiosity. And so I invite others to have the same, to be curious. So, why might he be spinning something? Is it because he's noticing the physics behind something? Is it because of the sound that it's making? Is it because he's seeing something at his level that we're not seeing at our adult level. Is something clicking in his brain?
We let him explore. We let him be curious and creative, and I think he has blossomed that way. I've seen him blossom in his learning by just letting him exist, letting him figure it out or try to piece it together because he is capable enough to ask for help or support when he needs it. So he's non-speaking, but that doesn't make him non-verbal, he has a huge verbal side of him. He's got a big receptive language. So he signs, so he can tell us when he needs help, he has to sign. And that's when we step in.
Lantigua: So let's be clear that nonverbal is not noncommunicative.
Daniella: He communicates with us in other ways, like so many different ways. We had to learn to speak his language. His whole village had to learn how to understand his language, so then we can be let into his world.
Lantigua: So he's so young. Have you talked to him about his difference? And do you think that he's up to even understanding how he is different?
Daniella: So my husband and I literally wrestled with this yesterday. So there's a house in our neighborhood that has these lights that are up for spooky season and they'll keep lights and they'll just change the colors for the next season, which comes, which is Christmas season. And he's mesmerized by the lights because they dance. And so whenever we walk at night, we stop at the house and he touches the lights and so forth.
Daniella: And I mentioned to my husband, I was like, "Whenever the family comes out, it would be nice to let them know like, hey, he's just like..." Because he's touching things. You never know how people are, and you want to respect their property, but you never want there to be a misunderstanding. So I was like, "Hey, if we see the neighbors, we can let them know, 'Hey, my son is autistic. He loves this. And so he just touches things because it feeds his senses.'" We haven't seen the couple come out when the lights had been out.
But yesterday we did, we saw them. And so I told my husband, I was like, "Hey, look, this would be a good time to have this conversation with them." And you know what my son did, he walked right past the house.
Lantigua: That's hilarious.
Daniella: He walked right past the house. He has never walked right past the house. He stops every single day. He stops at the house to play with the dancing nights. And I was like, he totally understood us. He pulled our hands to keep going. And I think yesterday was when I realized he is very aware, and that's why we are so careful about how we speak about him. We speak life into him because he is alive and he's filled with just so much beauty. But yesterday I felt like he was so aware of who he is. And he's like, they don't need to know. Let's keep it moving.
Lantigua: He made the choice.
Daniella: Exactly. Exactly.
Lantigua: You can't produce a moment like that. You cannot produce artificially a moment in which he gets to fully express his preference in such a clear way. But okay, this village that surrounds you, they also had to be told, starting with the grandparents. So how did that all go down?
Daniella: So I think sometimes my parents are still in denial over, and sometimes I will get questions. Do you really think he's autistic? And it's because our neurologist when we got the diagnosis, he gave us a caveat. He said oftentimes when kids are this young, we give an early diagnosis because we know that kids need additional support and we know how insurances work. It's possible that years down the line, he might get a different diagnosis, that it might be autism and ADHD, or it might just be ADHD and no longer autism.
But that could be, is almost like what I feel my parents hung onto. And they're like, "Well, it also could be that he's not autistic." A lot of people mischaracterize like all autistic people don't know how to make eye contact. That's false. He's very social, he's all this.
Daniella: And so I think that's why there are some people in my family who are in denial. It's because again, like we, our older generations understand autistic people to be a certain way and not... They don't understand the idea of the spectrum. It's not a matter as of, is he autistic or is he not autistic? It's right now, this is the reality. And we have to support him as it is and we have to teach him that autistic is not a bad word, that the autistic people are not broken, that he is not broken, that he is perfectly made, that he is wonderful, creative, and just such a sweet little human being and cultivate that.
Lantigua: Has the behavior around him changed in any way? Do you feel like you need to keep a closer eye?
Daniella: Definitely not. I think that if their behavior has changed, it has been with a greater understanding of the challenges. Because I mean, you got to think a lot of the old school mentality was like a kid acts a certain way. It's because you misbehaved also, assessment preamble. So their understanding of my son's challenges has changed. And so therefore, they're a lot more aware, their more aware of when something could be sensory overload for him. They have completely changed how we approach his play, the toys that he has so that they're not overstimulating and they're completely on board. They read things on their own.
Daniella: My dad especially helps him with some exercises that help him regulate, occupational therapy exercise that he can do that, that center him. And so they join in on that. So that has been really nice to see them really try to understand.
Lantigua: I mean, just the fact that they're seeking out information on their own and they're experimenting is just such a beautiful thing. So you have another baby, what happens to the family dynamics? Because babies tend to suck all the energy and the attention in the room.
Daniella: I don't know what I was thinking. I was like, oh, babies sleep all the time, not this baby. And I was like, "It's the second time around, I've learned so much." My baby has grief flux, has all these other different challenges that my oldest doesn't have. And I'm like, I'm raising a brand new baby that I have no idea how to approach. So that part has been hard, but my son is the greatest, big brother.
Daniella: I have so many people ask me, "Well, what did you do to make him be so sweet to his brother?" And I said, "Nothing." Literally, this is his personality. He is obsessed with his little brother and his little brother's obsessed with him. We're limited on the number of kisses that we can get from my son. I might get one kiss and then little brother, unlimited kisses all day.
Lantigua: Get in line, mom, get in line. Oh, that's so wonderful. And then what about like dad and parents and extended family? Have they been able to maintain a balance between giving attention to big brother and giving attention to baby brother?
Daniella: Yeah. So I think at first it didn't feel that way because I was like, oh my gosh, this child is so attached to me. But as baby brother is becoming more independent himself, like he sees his big brother, and big brother is a role model for him. Like genuinely so. And so he wants to... He sees big brother being independent and he just turned five months and he's trying to crawl. He's scooting everywhere because he wants to keep up with big brother.
So I feel like it's obviously easier to give attention to my oldest because he's so alert and he brings you so he could show you how to do stuff and he wants to play with you and so forth. So, you do see some of that. And he's such a good sport about sharing that attention too, like he understands, but when he wants his attention, he'll start singing and he'll start clapping so that we can clap for him. And so he knows how to call the attention back to him as well.
Lantigua: This is the thing about kids. And I always say this to people who are about to be new parents. They train you. They train you in the parent that they want. You just have to be paying attention and be willing to be that parent, to the extent that it's reasonable and safe to do so, obviously.
Lantigua: All right, my last question is, what do you need now? You were very clear about, this is my kid. I've got to advocate for my kid. I'm going to get him everything that he needs. What do you need coming into this next phase with your family and with your son?
Daniella: Sure. So we have been just so lucky because we do have this community that follows my son's story and they've supported us. And it has been just so beautiful to see people from so many different walks of my past life and current life just reach out and say how much my son's story has inspired them. And so what I need our community at large to continue to do is to continue to send us their best vibes, their words of encouragement, because some days are really tough. And so just keep getting in contact with us, keep learning. There's so much to learn out there, especially from autistic voices themselves.
Daniella: So let's work on centering those voices and listening to those voices rather than listening to these experts who don't know what it's like. The real experts lie within autistic people themselves. They have a voice, we just need to pass the mic to them. And so I ask that people pass the mic to the people in their lives who are not neurotypical, so that we can continue to learn from them. And then maybe one day our world in the future will be inclusive of people who are neurodivergent.
Lantigua: This is the kind of testimony people need to hear. It's acceptance first and then you build from there. Thank you so much, Daniella, for coming back.
Daniella: You're welcome. Thank you for having me.
Lantigua: If you haven't yet heard Daniella's original episode called Mom Has to Teach Grandparents to Accept Her Son's Difference, you can find it in our feed and on our website. We've also linked to it in the episode notes.
Lantigua: Thank you for listening. Thank you for sharing us. Thank you for showing up week after week. How to Talk to [Mamí & Papí] About Anything is an original production of LWC Studios. Virginia Lora is the show's producer. Kojin Tashiro is our mixer. Manuela Bedoya is our social media editor. I'm the creator, Juleyka Lantigua. On Twitter and Instagram we're @TalktoMamiPapi. Please follow us and rate us on Apple Podcast, Amazon Music, Pandora, Spotify, or anywhere you listen to your favorite podcast. Bye, everybody. Same place next week.
CITATION:
Lantigua, Juleyka, host. “OG Check-in: Toddler Son Is Teaching Her about Being Different.”
How to Talk to [Mamí & Papí] About Anything,
LWC Studios., November 15, 2021. TalkToMamiPapi.com.