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Asking for Help with Profound Autism: Why Does It Feel Like a Crime? with Lena Suarez-Angelino · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hi everyone. Welcome to a really special episode of the Inchtones podcast. As you know, I am someone who loves meeting good humans and I do believe that there is a universal draw towards certain people. I've got new friends, old friends that I can say the same about. And my new friend today is Lina Suarez Angelino, who we are quite literally ran into each other like, like physically, not like planned, ran into each other at a hot works studio locally in New Jersey. And I said, well, what do you bring into work on as you do your exercising? And remind me, Lena, what did you say back?
• 0:47
  Speaker B: I probably, probably said something like, oh, you know, sometimes maybe my notes or I work on, you know, just managing my emotions, working with my son. I said, I'm a special needs something.
• 0:58
  Speaker A: Something, something, something went ding. And I said, I'm Sarah. I'm a mom of three children too that have non speaking autism. And then we held each other, and then we held each other with eight saunas around us. It was a really, really impactful, very, very amazing, energetic moment for both of us. Lena, tell everyone what your company is the Light Collective and about your son Zach.
• 1:25
  Speaker B: And let me just say, the floodgates opened at our meeting. I just sobbed. I knew I. That timing, you know, was perfect and it really just was confirmation that we are not alone in this journey. And you'll hear me say this and remind, remind us time and time again. But I, my background is in social work and I always said, you know, you don't choose the helping profession, the helping profession chooses you. And so I had my. Started my own private practice in 2019, but then come 2021, I also opened up a consulting company which is Light Collective and co. Light is a reminder to let it go here today. And it was just kind of my way to expand beyond the one on one work to do a little bit more into corporate and, you know, nonprofit workshops and things of that nature. That's. I'll be hosting one this coming weekend at Hot Works. So doing some holistic healing there as well. And I think the background that I've had and the tools that I've learned and that I've taught clients on how to manage their own burnout, how to manage their own stress really took precedence in our journey in advocating for Zachary and navigating just the healthcare system in general and kind of dealing with those emotional waves as a special needs mom. Right. As a disability advocate. And there's so much that we can go into. I'll start there. For now.
• 2:51
  Speaker A: What do you feel was the driving Force beyond just being a helper or someone joining an industry as just a social worker, as being a. Someone who deeply desires to help. Where did that come from? Was that something that has always been innate within you as Lena?
• 3:09
  Speaker B: Yeah, from early as I can remember, I'll be in the grocery store. You know, a child would be acting up and just energetically, I would kind of, like, stand by them, and then my presence would just help calm them. Anytime I met people. Oh, Lena, you're such a light in the world. You know, I love your. Love your energy. I'm constantly getting compliments on my energy. And so, you know, when I'm in a bad mood, you know, because it's. It's. It's rare or, you know, it takes a lot for me to get there and because I. I try and lead with that positive, open heart. Right? I try. And, you know, I'm not afraid to smile at strangers and say, hey, and, you know, just be that. That stranger that was kind to them across their path. I don't hold hands and cry with every single one that I meet like I did you. But that was a very special moment. It was that I needed.
• 3:58
  Speaker A: We both did. We both did. I mean, in that moment, you mentioned a word that I've keep coming back to in the past few weeks, which is community. And it is a buzzword in general on social media and all the social connective powers that we use it day to day. And that is something that we're both trying to cultivate within our own companies and families as well. Talk to me how motherhood and specifically being Zach's mom, being blessed with Zach has changed your growth as Lena and also leading you to form the Light Collective and company.
• 4:35
  Speaker B: It's. It's really forced me to. Like, I thought I was pretty decent at asking for help and, you know, being open to receiving the help. And it's really forced me to get clear on the help that I need get and also be unapologetic in asking for that help, if that makes sense, you know, and I would try, like, I would try and go specifically to nonprofits and organizations and express, hey, I need help. Hey, I need a little bit more handholding. I need a little bit more guidance. And, you know, I was tired of the red tape sort of help, you know, or they're like, oh, we'll just call the hotline. And it's like, but the hotline's not going to get me the services that I actually need. Like, I have. I'm a therapist. I've Got circles of support that I. Group chats. So you're. You're.
• 5:21
  Speaker A: You're telling me more like about what Zach's. The support that Zach needed to thrive and develop on his own timeline. What about when those roadblocks hit? Like, when did you realize, oh, I need a total recalibration of how I'm asking for help?
• 5:36
  Speaker B: I think when I. I kept describing it as, you know, we would get the ball rolling, and then we would come to another mountain, that we had to get the ball uphill without using our hands. So then we had to build other structures of support systems along the way in order to get that ball back up over that mountain so that we can get it rolling again. So, you know, the first insurance denial, you know, for an adaptive stroller when he's 65 pounds, and, you know, and rinse and repeat that three times, and, you know, you start to really, like, shut down. You start to really question everything that you're doing, everything that you're fighting for, you know, and that comes down to diagnosis. That comes down to everything. And so it was like, okay, I have to approach this differently because me being patient, me being understanding, me being, you know, like, trying to, you know, outweigh the wait list. It came to a point where I was like, no, like, I need to speak up a lot louder. I need to speak up with a lot more assertiveness, I guess you could say, just so that I felt heard, because I didn't feel heard in the other way. Right. They. All the providers would shrug their shoulders, keep doing what you're doing. You know, you're doing a great job. And I'm like, cool. That doesn't change anything about situation.
• 6:50
  Speaker A: I need that. I need that stroller, adaptive stroller for my son. Thanks for the pat on the back.
• 6:57
  Speaker B: Right.
• 6:57
  Speaker A: At the end of the day, you're not going. I always say to the practitioners and such, and it's not a cut against their work. I am so thankful and respect the work of developmental pediatricians and pediatric neuropsych psychologists and psychiatrists. I appreciate it so much because it allowed. It informed me of my children with a diagnosis. And this. That's not. That is not driving or moving the needle even 1%.
• 7:25
  Speaker B: No, no.
• 7:26
  Speaker A: And I think what you're saying is that it at that. That when you realize that who I am as my sensitive, loving mothering self was not enough. It forced me to look internally, to change, but in a positive way, to be assertive for my children.
• 7:40
  Speaker B: Yep. And that there's other examples that come to mind. And I think I'm a really great community networker and connector. And so through my work in the field I've gotten to know a couple different professionals. I've gotten to know the mayor of our town because I've done a couple events with him. And so you know, I was attending an event for another organization and I, they're rebuilding. The school next door is being closed and they're building a park and I, I made him pinky promise me. I said pinky promise me, Pinky promising with mayor that Zachary will be able to play on the playground structure. And you know, and they said okay. And he actually sought us out and helped me like I was able to discuss plans and of course initially, you know, I was told due to space constraints they could only do tiered playground like systems and but then they highlighted all the wheelchair accessible perimeter access, you know, elements to the playground and I said okay, I understand, thank you for, you know, doing the best that you can. And then about a month later I came back and I was like, you know, let me paint a picture. I can't lift £90 five to ten times within five to ten minutes just so he could play with a peer. I said it does need to be a ramped access like playground because that would be like interabled and equitable play. And that's how we change the world. Another example, they didn't give me a hard time, they changed their, they changed the plans, they modified the plans.
• 9:07
  Speaker A: I, this is, this is bringing up a really wonderful point that I have seen rise in conversation with companies in employee resource groups, abilities group parents, groups of children with special needs or neurodiversity support. The anticipatory anxiety of companies or a town to support children such as ours is seen as like going to Denali and backpacking without any guide. And then they implement it for you anticipating that it's going to cause such an energy sucking siphon their plans and then it doesn't. And I think it's the practice like any, any other skill set. It's the repetition of realizing the support is not that difficult to offer, but it's the mentality around providing support. And that's what that example speaks so much to that about your town.
• 10:09
  Speaker B: Yeah, and, and there's, you know, I'm very big on, we can't be 100% accommodating to everyone's needs 100% of the time. It's literally impossible. But we can do a lot better, right? We can make a lot more effort that's a little bit more universally expansive, versally accessible. You know, I had gone to an aquatic center that is attached to a 3 to 21 school for disabilities. Never in a million years would I have thought that changing tables in the aquatics, like in the bathrooms would have been inadequate and would have been, you know. And so I walked out of the back into the lobby and I said of all places, I thought here and like children, you know, like hospitals dedicated to working with children with disabilities. We. I wouldn't. These would be the number one places I wouldn't have had to worry about will the space accommodate him. And with just that thought, I didn't have to write a letter, I didn't have to call, call a news station. I didn't have to make a big stink. But guess what, there's full size changing tables installed now. You know, so it's just even with, with one question coming at it with curiosity because they're not trying to purposely exclude not they're trying to be as inclusive as possible. You know, I know there's some, some companies that get a bad rap. You know, they'll do sensory times. But it's before the park opens to the public and it's like, are you really doing that as like a pr. Did you. Why can't we get the full day? Why can't we, you know, why can't we get one day? Why can't we get. Yeah. During the normal operation hours. Right. So there's certain things that it's like, who is this really helping? You know, is this really with us in mind?
• 11:46
  Speaker A: Questions based in curiosity, genuine curiosity have also become something that hit my heart because you aren't. And both of us are not coming at it with this iron fist of demanding accommodations. We're saying, have you considered that son needs to be changed and I can't lift him onto what is provided right now.
• 12:17
  Speaker B: You and I have only goes up.
• 12:19
  Speaker A: Probably both changed our sons on the floor. And in my mind, as someone who doesn't want to ruffle feathers ever, I think sometimes I say we're just, we're just more immune. Our immune. Our immune systems are going to be so lock solid that, you know, I do believe that when my son was mouthing and seeking sensory input through mulch at the park, as the third kid in the family, I'm like, it's roughage, it's fiber. And there are appropriate ways to go about providing that. Again, do not have to be such a massive energy point in a company structure or a park or a social setting or a swim school. Right. It can be as simple as one mother or father or caregiver taking action to just stay curious.
• 13:12
  Speaker B: Mm. Even when we met, you had asked, where is this coming from? Right. Where, where are these emotions coming from? And it like, just allow me. I, I never, I didn't feel judged by you on.
• 13:23
  Speaker A: I just really wanted to know, to learn. I wanted to know you better in that moment so that I could hold you with a more understanding of you.
• 13:32
  Speaker B: Yes, yes. And it was just, it was such a beautiful thing. And again, with that curiosity and, and I think when we start to paint pictures for providers, for developers, for different companies, they can really see. Oh, I see why that, that is as important as it is to you. Right. Why this can help to expand services for the community. Right. And why it's even in line with their mission. Right. Their missions and their values. So it's been a really beautiful thing to be able to use my skill sets as a social worker. And my background is in working with severe mental illness, so schizophrenia, bipolar disorder, the developmental disability side of social work, and disability, like that is a whole new world to me. And so it's like, no, no, I need that support. I need that guidance. I need to know what our rights are, how I can advocate, who do I advocate to? Because I only have so much energy reserved to do that and show up as a mom and show up as a therapist and show up, you know, as a partner to my, my, my, to my husband. And so it's, it's just, how do we do it? All right? And so how do we, and that's where we have to zoom out. That's where we have to pause and we just have to kind of try and remember, okay, one, one step at a time. And it's hard, right? It's hard because. And our biggest thing was, you know, we kept getting told he was too social to be autistic. And it was like, come on, please. Like, let's move past that.
• 15:00
  Speaker A: When, when something, when some of those very antiquated phrases come from the most esteemed practitioners. I wonder again where the tribes of women and mothers like us can continue to push forward in a very cerebral and strong, non argumentative way of almost showing our shock that that is still a phrase that's being used as a, as a marker from even a DSM diagnosis pattern. I'm, I hate, I, I, I'm stuttering right now because I can't believe that you are sharing that now. Like, this is, it is 2025. That sounds like someone that my mother had as a pediatrician would have said in the 60s.
• 15:50
  Speaker B: And then for them to say, still say two, uh, you know, but I'm trying to get your son as many services as possible. Well, the way that the systems are set up, an intellectual, developmental delay, severe diagnosis doesn't open the door. To have someone come in and work on daily living skills doesn't open the door. You know, so it's like we have to work within the systems and the confines of, of healthcare and of what is expected. And I'm not asking people to lie, but it's also like that's what you're ruling. You're ruling out autism based on a non verbal child. Non speaking child is too. Right.
• 16:26
  Speaker A: Like, like do you ever. Sometimes that happens and you look behind, you're like, are they talking to what?
• 16:32
  Speaker B: Like who are they talking.
• 16:34
  Speaker A: Who are you talking to? See that my son is. And again, I know and have such love for how my daughter and sons see experience the world, like jumping in their world. And then when someone who is a practitioner to it says something like that, you're like, was my name called for this appointment with them? Like, hi, this is the, the child that we're discussing. Right, Correct. Right. Yep. I want to, I want to read a quote from this came up just as we were talking. A friend of mine from childhood works in the C suite at a major makeup brand and she wrote a book called Carrie An Empowered Approach to Navigating Pregnancy and Work. And I personally went through a very severe postpartum experience with my first child, who is my typical, my neurotypical of the three. And she has a quote in here that I think resonates with you and I beyond navigating our work and our lives as mothers into the special needs realm. And it rose up so quickly as we were talking and I had to pull it up. Her quote is, you can do it all. Not at the same time and not alone. And it is this thread that runs through her entire book about that being the case of any mother. But it really hits home for special needs parents and mothers because as you said in the beginning, asking for help, but being very specific in that ask looks a lot different for women and mothers like us. Yeah. And deserves to take a beat and let it really resonate because the constant course correction of how help and how to also can create a lot of emotional fatigue. Do you find that within the community of special needs parents reestablishing and growing and maintaining the energy to mother and constantly change and course correct and ask for help. That is a major part of it when it comes to just our bodies and minds staying focused enough and having enough energy to do what we want to do.
• 18:43
  Speaker B: I think it's for sure, I think we have to be a lot more bite sized in what our self care looks like. A lot more, you know, appetizers and throughout the day because we, we don't have even 20 minutes, a half hour, 40 minutes, an hour to, you know, especially if you're a single parent too, you know, to, and then adding, you know, a special needs child on top of that or multiple children. And so it's, you know, I, I did a whole segment on the honest help, right? The honest help is yeah, can you put his wheelchair together? Can you lift him in and out of the car? Then it sounds like I'm being sarcastic and it's like, but that's the help I truly do need. But that I can't rely on the, the average person to do or they don't simply because they don't know how to do it. So I've been trying. One of the things that I've been trying to do is when someone asks me for help because I do want to receive the help and I do want to be grateful for the help I do receive. But saying sure, what did you have in mind?
• 19:46
  Speaker A: What a great question.
• 19:47
  Speaker B: Say that again instead of knee jerk reacting and saying no, I got it, no, it's fine, don't worry about it. And doing it yourself. When someone asks you for help, say sure, what did you have in mind? It puts it back into their like perspective and you know, then they can offer what they have capacity to do.
• 20:08
  Speaker A: Right. I guess you could also flip that as well to being the person that's inquiring if someone is able to help you had without even knowing if they desire to. I think being able to frame that back even to when you do the hard thing to ask for help and they say sure. And then you ask too, what does that look like for you? What's, what is comfortable? What level of help and detail are you looking to do or to at least start to help? I just think that's, it's really powerful and I think that should be literally your billion dollar idea is coining that phrase. It's really true. Lena, that hits me so, so massively because it's not about the help that's being offered. It's how to be so specific about what does drain us in a capacity that most will never understand. So being able to phrase it Is like, what, what, what did you have in mind? Because then that can just create wonderful veins of communication. And it's never lost to me that even being able to speak to my needs for my children and myself is such a win. Having children with non speaking autism.
• 21:26
  Speaker B: Yep. And that's why I think it's so important to build a village around you of people who want to get to know your family, who want to be a part of that village, just because, you know, I would trust you to watch my kid more, you know, over the random person from care.com who Absolutely.
• 21:45
  Speaker A: Oh, 100%. Like, if you right now called me and you're like, I gotta get my husband to this work meeting. His car broke down. I'd be like, great, I've got two hours. I'm gonna bring my computer over. Where and when and how? And I probably, I. I would think that I would start to be able to tell you things about Zach that maybe only you would know.
• 22:07
  Speaker B: Right, right.
• 22:08
  Speaker A: Because of how I see him fully as another special. As a fellow special needs mom.
• 22:13
  Speaker B: Yep, yep. And the same, the same applies. Right. And that's why I, I really wanted to push for, you know, certain diagnoses, push for certain services so that I can also observe providers, I can observe other parents, I can observe those interactions because I, I'm used to speaking all day, you know, so it really makes you think outside the box of like, how do I expand his environment, how do I meet him, where he is? And, you know, because he can hum Jingle Bells. He can, you know, he's clapping to bingo now. He, you know, he's doing all these things, and I want to continue to nurture it. And we love the school that he goes to, but beyond that, Right. When we have limited therapies, when we have limited, you know, things, I want to be able to just let my guard down a little bit as opposed to having to answer a million questions, having to, you know, apologize for, for their behavior or, you know, warning their peers like, hey, you might pull your hair. He doesn't know better. Like, I mean, we're working on it, you know?
• 23:15
  Speaker A: Yeah.
• 23:16
  Speaker B: Oh, my gosh.
• 23:16
  Speaker A: That. That's Millie. Millie. Just a sidebar story that cracks anyone up that I tell. Millie has this, like, insanely beautiful strawberry blonde hair. She does not give a rat's ass that she has beautiful hair. It's just, it's her hair. She also, once she figured out when she was a toddler that I was putting bows in, like the, the top knot, she would start ripping them Out. So I'm like, okay, she doesn't like bows. I can, I can push my like ego aside for like gross grain bows right now though. She is so aware of bows that if we see another little girl or boy on the playground with a bow in their hair, it's like a moth to a damn flame. She has to get the bow because she's trying to save that little girl from the bow in her hair. I mean, you can't make it up like going to Mendewaskin playground. And my number one, are the gates closed? Number two, does any child have a bow in their hair? It cracks me. God's laughing with me on this. Millie is like, I gotta save every little girl from their bows, man. Those things are sensorily annoying. They cause me grief, they cause me to be unpresent. So let me save everyone. I will see her like playing and then she takes off and the hand goes up and I'm like, millie, wait, slow. And it's like slow motion. And I see the hand go and like, you know, one out of ten times she gets there quicker than me and the, and the little girl, you know, is like jarred back. And I say, the mom or the nanny, I am so sorry. Please let me tell you that my daughter has non speaking autism and she doesn't like bows in her hair. So she's really sensitive to other children not wanting bows in their hair even though she doesn't know that that child might want the bow in her hair. And it's so interesting to like the pause that's taken because some people are like, oh my gosh, I get it. There's some things that I don't like wearing. I hate wearing. And so there's this easy dialogue of or you should really have her. And I would say, thank you so much, I will do better job. And I think to myself, if that's what someone shares with me, I'm so glad I don't wake up as them every day.
• 25:17
  Speaker B: Yes.
• 25:18
  Speaker A: I'm so aware. It beads off me now, you know?
• 25:22
  Speaker B: Yep.
• 25:22
  Speaker A: But yeah, Millie and the. Millie and the bows, man.
• 25:25
  Speaker B: Well, that's her million dollar idea. She's gonna make sensory friendly bows.
• 25:28
  Speaker A: I mean, I don't even think but here maybe, maybe she's like, get rid of the bows. I don't think any little girl really wants that alligator clip in their hair. But I've been known to like sneak it in and then the air blows the wrong way a small piece of thread and she's like. But I'm like, oh, Mel looks so good though. And she like, looks at me like she's like, mom, enough.
• 25:48
  Speaker B: He won't keep anything. And that's been our journey too. Like, because he's globally delayed, so we're dealing with like physical walking and I'm press pause.
• 25:56
  Speaker A: Tell me Zach's exact diagnosis. I didn't get that from you.
• 25:59
  Speaker B: I wish I could tell you because the doctors can't tell us what it is. We've done whole genetic testing, we've done MRIs, we've done everything under the sun. And our next step is Undiagnosed Disease Network because we still don't have a concrete diagnosis. So. Which is why I had to fight so hard to do. We had to beg for a cerebral palsy diagnosis, which apparently that's also spectrum disorder, but he's had botox, he's done casting on his legs to work on ankle mobility and. But because his MRIs show everything is clean, everything's normal, that we were kind of getting a hard time to get the cerebral palsy. But it's like when your insurance is only covering 60 visits in a calendar year across OTPT speech. So again, putting that into perspective.
• 26:42
  Speaker A: What?
• 26:43
  Speaker B: Yeah, yeah, yeah, yeah. No, no. We're forced to choose between if this kid walks, talks, dresses himself, feeds himself. Yeah. So we have. Because we only. That's not even two therapies a week. I, like, they won't cover certain things. So, like through Zach's eyes, I've been open to that world of just like, it is so unjust. It is so. And I, like, my heart breaks because I. Why I. I'm literally fighting for diapers. I'm fighting for. You forced us into a wheelchair before we were ready. Like it must. You know, we see how the wheelchair helps him, but in the same, in the same breath, we would have been just fine in a wind stroller. We would have been just fine. And you know, things. And so it's like, you know, they won't approve an adaptive tricycle that would, you know, we want to reduce his weight for. And so why DO tricycles cost $5,000 when it's for a special needs family? I don't know. But that's what they are. So I'm making it my full time job through any like healing circles and stuff to. Listen, you want to hire me, donate to his fundraiser. And that's how, that's how I make, you know, so I take insurance through my practice as a therapist and then everything else under the sun, I'm making as my full time job, you know, through the fundraiser, because that's, that's the only way I can do it.
• 27:57
  Speaker A: Because at some point we both, and I'm. I'm sure we're speaking to the masses here of women and mothers in our same situation. At some point, there something has to give and you have to say, I need to focus on one or two things to keep the ball moving. And I think that you've done it. That's. That's incredible that you were able to take, you know, your profession and then in tandem with that, be able to create the fund to support the needs that you aren't supported in from the healthcare perspective. Thank you so much for just being so vulnerable about how you live, your son, your family, and what you do daily, which I got to run in and bump into you to see what you are doing for yourself, to stay the best version of Lena for Zach. And that is one of the greatest lessons I've learned in this journey is being the best, Sarah. Being the best mother takes a lot of conscious choice on my end, and that is for my children to become theirs. So thank you for being another shining light in this. And I love the name of your company because you are a light. You very much are.
• 29:09
  Speaker B: Thank you. Thank you. Likewise. Thank you for having me, Sarah. Thank you for our listeners for listening to my story, to Zach's story, and just being a part of our journey with us. So thank you.
• 29:19
  Speaker A: I couldn't agree more. So until next time on the insurance podcast.