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Profound Autism, Disability Care, and Why Mothers Must Be Believed with Liv Rojo · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hey, everyone. Welcome to the latest episode of the Inch Zones podcast. Before I press record here, there is something that needs to be said. Well, this is what happened. There is something about the truth and the lived reality of such beautiful belief when you meet, even via zoom or via virtual, of another mother of children with profound autism and special needs. And today I have Liv Roho here of praying through autism. We quite literally just got introduced like weeks and there was something about how she shared so pointly about her reality and truth, and it's coming full circle with me day after day that the realities of mothers and caregivers with profound autism, if we don't continue to share the absolute truth of our lives, we will become erased. And it's not because the world doesn't know it exists. It's that it's too hard to digest. And Liv, I'm so thankful that you're here today. I'm so excited for our conversation and I'm just so thankful for what you have chosen to put out into the world, for all of us to see, to bear witness to, to stand in line with you and to use your voice and platform through what you believe is right and good.
• 1:23
  Speaker B: I'm so grateful that you have me here because honestly, a lot of what's out there is being expressed based on your own experience. And I'm not even here for that myself. I. When all this broke out, you know, about profound autism and you know, autism, autism being on the front lines of being spoken about, I thought of my aunt, you know, who is 60 something years old, her son is 36 years old. Profound autism. Thought of my mom, you know, may she rest in peace, who was his full time caregiver for years and would get home when I was younger with bites, with scratches. So I've seen all angles and my heart spoke to me more about because of them, not even because of my own experience. And that's what we need to really focus on, to speaking for others, not just for ourselves or our own experience, because others need us more too, despite what we're going through, you know?
• 2:13
  Speaker A: Yes. And I think what you got to experience through your life was that you stood witness to your mom since a kid, the caregiver, since it, since you were a child, experience of your cousin's experience and of your mom being a caregiver. You took in the actual truth of profound autism before it even became part of your exact world.
• 2:36
  Speaker B: Absolutely.
• 2:37
  Speaker A: I think that's one of the things that is rising so deep or so, so significantly to the top right now. In the national autism conversation is we have to believe the real mothers and caregivers or if we're not that bear witness to it with. Bear witness in your eyes. And it's going to be really difficult.
• 3:01
  Speaker B: Exactly.
• 3:02
  Speaker A: It is not fun to sit and look when. When your child is having a complete meltdown. I just. Yesterday I was so close. I mean, it was one of thousands. It's happened, but my son fully just collapsed in the middle of a parking lot and needing to get him into a therapy. And those things happen more than we can ever share.
• 3:28
  Speaker B: Yes.
• 3:28
  Speaker A: I don't share that to scare anyone. I just share it in. In the vein of truth. And so I'd love to just hear more about your why and why that really does matter, especially now in the national conversation.
• 3:43
  Speaker B: I'll start with the fact that. Okay, you know, I keep hearing, you know, that there's no increase in autism. That, you know, it's just that now they're diagnosing better. My lived experience as a child. Okay. And I'll tell. I can tell you as a child, as a cousin, as a teacher. When I was little, I was. I grew up with my cousin. We went to elementary together.
• 4:03
  Speaker A: So.
• 4:03
  Speaker B: So, you know, I saw everything. There was only two classes in the whole district, at least here, that had children like him. And there was probably like maybe seven kids again, two classrooms, whole district. Then as a teacher. Now I'm seeing almost every school, right. Having like three to five classrooms with like eight, 10 kids within. The increase we are worried about is profound autism. And I want to make that clear because people can tell me, oh, well, because they were an institution. No, I mean, maybe my city is different, but I saw it as a child. I've seen the increase as a child to being a teacher so that I can debunk with my experience in that fact. Secondly, having to observe what you just said. Right. Having to see the perspective of my aunt as his mom. She at one point didn't want to live. She did not want to live. So seeing that and seeing my mom having to comfort, cheer her up and motivate her using God's word. I watched that as a kid.
• 5:03
  Speaker A: Yes.
• 5:04
  Speaker B: And we're so focused on the identity, and I'm sorry, but that we're. It's become an idol at this point. Yes, it's sweet. That's where it's wrong because we have turned it into an idol. And if we say profound autism, there's different brackets of everyone that suffers behind that diagnosis that we're not caring about. You Know not only the person with profound autism. I mean, I saw my cousin get in fights growing up because they would use the R word on his. On his brother. He would get suspended constantly getting in fights. So I saw his experience as a sibling. I saw my cousins having to lock their doors, stay in their rooms because of their brother. You know, I got bit by my cousin when I was, like, four, right here on the cheek. And another thing that I really want to kind of speak about and please let me know what you think is having to really force the terms you want to use. Right. When my mom explained to me when I was four years old, she didn't say, your cousin bit you because he's severely autistic. So show him grace. To me, that sounds colder. He bit you because he's autistic. Right. She explained it to me, separating his humanity from profound autism. Or back then, we just used autism because when we said autism, we thought of him. She told me, it is not his fault. It is autism's fault. Remember, he is a human being. He's your cousin. He doesn't mean to, and he doesn't do that because that's who he is. It's just autism takes over and he can't control it. To me, that explanation sounded way more compassionate than now having to force and say he bit you because he's severely autistic and, you know, he doesn't know better. And that's the thing that we're being forced to use terms when in the profound autism community, which now we have to use profound autism, they might not fit the narrative of our lived experiences, and they're being forced by people who do not live this life.
• 6:58
  Speaker A: I couldn't have said that better. The identity hits home for me, because when you live this life and you are around others who aren't living this life, and you see the humanity, as you say, behind these children, and you see the potential and the things that are so tightly wound within the disorder, and you learn to, like, intake so many nonverbal cues and communications that when my son pulls out a chunk of his sister's hair and that leaves a bald spot on her.
• 7:39
  Speaker B: Yes.
• 7:40
  Speaker A: That is not my sweet little boy.
• 7:43
  Speaker B: That's not his identity.
• 7:44
  Speaker A: That is not.
• 7:46
  Speaker B: No.
• 7:46
  Speaker A: That is him trying to convey in every way something that he is unable to do because of. Of his diagnosis.
• 7:54
  Speaker B: Exactly.
• 7:55
  Speaker A: And it pains me because I don't know if there's an ability to put anything into words, to write any article, to share on any platform and see what that reality is unless the world and the community or the. Whoever's around you to actually step into it and take over, to learn and say, oh, my gosh, what you were saying is true. So what I've always been prone to in the past few months is saying. I know that there's words that are used that are murky and not particularly choice in their delivery.
• 8:33
  Speaker B: Yes.
• 8:34
  Speaker A: And what they're trying to do is they're saying, we believe mothers.
• 8:40
  Speaker B: Exactly.
• 8:40
  Speaker A: Believe the moms and caregivers who are living this. And I know that's where you and I align so greatly, is that we have to believe the mothers and caregivers that are actually living this. And even if you don't want to look at it, that should. That should be. Should scream to you that you should believe them more. Because if you can't watch it, you better believe. Why would I? There's no reason that you or I should ever want to share the realities that we do. Unless it was real.
• 9:09
  Speaker B: Exactly.
• 9:10
  Speaker A: What.
• 9:10
  Speaker B: What benefit do we get from it?
• 9:12
  Speaker A: Zero.
• 9:12
  Speaker B: What. What do we win? Absolutely nothing.
• 9:14
  Speaker A: So upset with me saying my son ripped sister's hair. I'm not looking for there. Zero. There's zero upside.
• 9:21
  Speaker B: It's. It breaks literally a fact, you know, that you're speaking. Yes. And I mean, I. I can say that with you because I've. Having to see my older daughter, who's a sibling, flinch when her sister passes by kills me.
• 9:35
  Speaker A: Right.
• 9:36
  Speaker B: And her having to go to school exhausted because we had a night of meltdowns, of dysregulations, and, you know, her still getting up and tired and going to school. So to me, I just. I think we're confusing suffering and identity. Your child's suffering does not identify who they are as an autistic individual.
• 9:55
  Speaker A: That's right.
• 9:56
  Speaker B: And what they're trying to do now is. Okay, how can we take away some of the suffering aspects of this, let's say the word disorder.
• 10:04
  Speaker A: Yes.
• 10:04
  Speaker B: Right. Because it is. It was originally asd. That's right. And again, people who do not live it in this way have advocated so loud to change things. I'll be honest with you. I really got an epiphany and a realization of this when I went to TACA to the Profound Autism Allegiance Conference. They gave a presentation. Every single person there cried. Every single person. Because they said, do you feel supported? Did no one raise their hand? Who feels like things have not changed? Everyone raised their hands and they cried. And to learn that research has gone down for these individuals to 6% now, when it was 92%. Okay. In the 90s, why? And this story needs to go around more, especially now. An autistic intern at the legislator's office saw the term profound autism in the Autism Cares Act. Right. Including those with profound autism for them to be included in research and studies and all of that. The profound autism allegiance went and fought at the White House for this. They had been fighting and they finally it happened and they were so happy. But then comes in an autistic individual who's interning saw this term, chose to feel offended, and told the legislator, this offends me. You cannot use this. So then what happened? The legislator felt, well, this person's autistic, you know, like, I guess they didn't want any trouble. They removed it. So the way that they worded it, it said including those with, you know, comorbidities or like including those with additional struggle. Just something very vague due to that advocacy. It went down from 92%, 37%, and we're now at 6%.
• 11:44
  Speaker A: Yep.
• 11:45
  Speaker B: And it just got added again because this poor organization goes to the White House. Okay. The, the head person, I forgot her name, but she's amazing. I, I'll try to remember if I can. She goes to the White House like a few times a month to fight for profound autism. And the way we all cried in that convention to realize just the disservice and how this population or subgroup has been erased when they were the original face of autism, they were the original. It's like settlers came in to colonize, you know, and to completely take over.
• 12:17
  Speaker A: That's right. That's right.
• 12:18
  Speaker B: And, and they slowly have been erased. And that's why advocacy cannot be based on offense. On your feelings and you applying everything to you. If this doesn't apply to you. Sit down.
• 12:30
  Speaker A: Yes. I couldn't agree more. I think as someone who has a late diagnosis with ADHD and as someone, I have a very, I grew up probably having a very reactionary personality because I felt things so deeply. And I do, I feel things really deeply. I, I, I. Everything for me probably feels ten times as, as great. Right. My feelings are not to be what I react with. They should be used as a guide. And I believe that that's where we have lost so much and have begun to erase profound autism from the neurodiversity movement. Because I do believe that there, there is a brilliance within neurodiverse individuals.
• 13:14
  Speaker B: Absolutely.
• 13:15
  Speaker A: And we have to separate that distinction because there's an ability to self advocate and to have the agency to. That's the key Your reaction?
• 13:27
  Speaker B: Absolutely don't. No.
• 13:30
  Speaker A: And as someone who's realized the, the capacity to navigate her own reactions and feelings and emotions, it's not lost on me that the neurodiverse. High functioning, you know, low support needs. Autism is not the same.
• 13:48
  Speaker B: No, it's not.
• 13:49
  Speaker A: I like to your point, when your daughter flinches when your other daughter walks by. Cause she's worried. She doesn't know what.
• 13:55
  Speaker B: It's heartbreaking.
• 13:56
  Speaker A: It's heartbreaking. Today my children get picked up by their van and they go to their, their special needs school. My daughter at ten and a half, she can leave out the front door and walk to the, to the van. Right. She's gotten to the point. And it's, and it's the. As I share, it's such an inch zone win. Right. Literally walk down the path and into, onto the driveway into the van. My son, I thought we'll get there one day and you know, he tried to elope on the first step and I caught my hyper vigilance. I am so like your daughter.
• 14:32
  Speaker B: Like same here.
• 14:35
  Speaker A: And it doesn't make it wrong to share those things or to hear the other stories about it. It's just the truth.
• 14:43
  Speaker B: There are hard truths and people are choosing to feel offended by hard truths. That's, that's what it is. That is because it's uncomfortable. People like to live in comfort. They, they want to stay in a bubble of comfort or they don't agree because they don't go through it. And that's the thing. It's like our brains have. I don't know what has happened to our brains, but a lot of people choose to disagree with feelings. And you know, and that's, you know.
• 15:08
  Speaker A: Yes.
• 15:09
  Speaker B: You can't disagree with a feeling someone's letting you know either what they feel or it's even worse when they disagree with a fact. I mean, I've had instances where I'll show data and they still disagree. And it's. Why? Because they want to protect their comfort of what they want autism to represent. You know, because, and I even recently.
• 15:29
  Speaker A: That helps them organize their own choices. You know, I think a lot of the narrative disruption that advocates like you and I that actually live this life or have children that do or have had family members, etc. I think that it disrupts the narrative and the story that other people tell themselves about what autism is when we share it in our louder and more powerful and with a more, you know, proclamative like position on it, that creates discomfort in the lens of life. Which, which they have created for themselves.
• 16:06
  Speaker B: Exactly.
• 16:06
  Speaker A: And I, I can, you know, I can have empathy for that because I, I know that emotional turmoil is very uncomfortable.
• 16:15
  Speaker B: Very.
• 16:16
  Speaker A: Not saying that. It's not. I mean, and if you're not willing to risk any sort of discomfort you showed me, it's like people keep showing. When people show you who they are, believe them. Right. That's what, that's what this is coming to. It's like you are so uncomfortable with a more wild reality that you are willing to shape shift the truth for your.
• 16:40
  Speaker B: Yeah, it's actually psychological. Or you even have the ones that maybe do live this life, but they've kind of, you know, done this psychological thing to protect their pain, protect their reality and it's comfort. Right. It's less painful to do so. And I'm going to be honest with you, based on my observation, one of the things that pains me is a lot of them are the ones that have little ones. And I, I can admit my arrogance back then when, when you know, my daughter was smaller, I, I was an inclusion teacher. I thought I was going to rock it, it was going to be easy for me, I was going to do better than others. No, I definitely that did not happen. Being a parent to being a teacher is completely different. And I became a very loud advocate when she was younger too. You know, puberty humbled me and what pains me and not that I wish this upon anybody, but for those that you know, especially are moderate, especially to high support needs, you don't know what puberty, what's waiting for you. And a lot of the loudest ones are the ones with either the less experience and the younger ones. And it's like you don't know. If you don't humble yourself, you will be humbled.
• 17:46
  Speaker A: You know, it's interesting, I take a lot of reflective look back on my own and reason why inch zones even rose because I kept hanging on the simplest of small wins because it was, it helped me get through the hope.
• 17:59
  Speaker B: Absolutely.
• 18:01
  Speaker A: And I think that while there is room in our lives for hope to hang on these small ones, it's actually doing a disservice psychologically to the reality of what is to come.
• 18:14
  Speaker B: Yes.
• 18:15
  Speaker A: Doesn't mean that there are miracles and joy found in those small moments. There, there, there's such, if anything it's allowed me to have an increase of joy because I see these small gaffes where I'm like, I love that I get to see the glimmer in my daughter's eye when I start to sing her favorite song. Like, if I even so much as, like, look at her with the tone of that song, I'm like, I've won the lottery. Yes.
• 18:46
  Speaker B: And that's the thing that we see more beauty. And people don't think. They think we might be, what, bitter because we talk about the hard things, but it's actually the opposite. We, I believe we've been humbled so much to see the beauty in the smallest, most minuscule things because of it.
• 19:00
  Speaker A: Yes.
• 19:01
  Speaker B: And talking about the hard parts doesn't mean that we don't have joy or beauty in this journey either. We're just literally talking about what we go through.
• 19:09
  Speaker A: Like one of my best friends from college always said to me, and I think this is where I think our own motherhood and our own journeys as women, she said to me in college, because I was a deep, you know, deeply feely individual. Everyone else is looking at the snow falling and you are seeing diamonds fall from the sky. And I remember thinking back then, it was such a powerful. And I was like, I do. It's just. It's so beautiful. And it was. It's become this, like, phrase to me is. And it's no surprise sometimes that I have the children I do. Because I.
• 19:45
  Speaker B: That's what I was gonna say. I'm like, makes sense.
• 19:47
  Speaker A: It makes so much sense to me.
• 19:49
  Speaker B: It does.
• 19:50
  Speaker A: I think that when I look at the mothers that are ahead on the journey than me, that are 10, 15 years beyond that I've connected with, there may be in their 50s, 60s, that have, you know, 30 and 40 year old, grown profoundly autistic adults and children living with them. A few of them have said to me, thank you for being on the younger side of this and telling the truth when you have.
• 20:15
  Speaker B: Yes.
• 20:15
  Speaker A: And I was wondering what you, Instead of protecting.
• 20:18
  Speaker B: Yes.
• 20:19
  Speaker A: Think that that's part of why I think I aligned so deeply with what you were sharing online.
• 20:24
  Speaker B: Can I be honest? I think because I healed, I had to go.
• 20:27
  Speaker A: Yeah.
• 20:27
  Speaker B: You know, through therapy. I really had to heal to be able to talk about these things, to face them head on. Because there, there truly is a lot of psychology behind why some people either don't share why they say that accepting your child's suffering is part of autism. If you don't accept their suffering, you don't accept them. I mean, no, that's. That, that's relating suffering to identity.
• 20:52
  Speaker A: Yes.
• 20:52
  Speaker B: And I, I don't like time my daughter's identity to her hitting her sister or scratching me or literally punching me in the head. As her identity. That's not her identity. Her identity to me is, you know, her little stims or the way she loves to color or the way she loves art and her sounds and her laughs and, you know, a lot of her own quirkiness. That is her identity. And I learned to separate those things when I healed. And healing is super important within because you have to face the pain. The more you protect it, later on, it will come and slap you in the face.
• 21:28
  Speaker A: It will, and I think it will. Again, this is a more broad. This is a broader conversation, but that's what I think is so ripe these days about people and their. How they identify and. And. And why they do it. And there's. There's a lot of buried pain that is very. For each individual. And I never want to. I always want to say, like, you know, you and I, while we align deeply with our thoughts on this, now we are both on our own individual journeys with this. And I absolutely away or say to mothers that are newly diagnosed, like, it is really painful. It is a cycle of grief. And you will. There are going to be things that continue to hit, but attack that head on, talk about it, expose it, get it there. I think as women and mothers, the more that we can ask to be witnessed in our pain, the more it disperses and allows for the healing to happen.
• 22:21
  Speaker B: Absolutely. Which is very important for you, for yourself as a mother, you know, and you need that because, honestly, not healing, that part of you can end up making you sick later on. Holding onto that pain physically.
• 22:35
  Speaker A: And I think the energies around that, especially as we latch on or not latch on, maybe just love the moments of joy that we find in our kids or the connections, however little or fleeting they are, that is. That is the energy that sustains, you know, there's. It also counterbalances those moments of real fear and pain that align with this life as well. And the maternal intuition that I. That probably just slapped me across the face, you know, like, in some sense was when I realized that that sort of unconditional love that I was giving to my children as they grew and developed on their own timeline, in being able to give that to myself, it freed me and healed me from everything else. That was.
• 23:21
  Speaker B: Yes, yes. And I mean, I'll tie in my faith in this. I remember, you know, a friend of mine told me, she's like, you need to parent yourself the way that God would parent you. And she's. He sees you, you know, that's what she told me. He sees you. So you have to treat yourself how you imagine he would parent you.
• 23:38
  Speaker A: That's right.
• 23:39
  Speaker B: And that is so important. And I learned kind of too late to pour into myself and sometimes even putting myself first. And you have to that way you're the best for your children. You have to have a little bit of selfishness in you to be able to, you know, parent them the way that they need you. Because if you're okay, they're okay.
• 23:57
  Speaker A: Yes.
• 23:57
  Speaker B: And, and, and that's important.
• 23:59
  Speaker A: Someone like I said, our, our mutual friend Kat about this.
• 24:02
  Speaker B: Yes.
• 24:03
  Speaker A: She is relentless on her mission to share that her self care, her exercising and steps and strength training is a non negotiable because she's.
• 24:14
  Speaker B: Same here.
• 24:15
  Speaker A: And I, and I, and I agree. I mean I am. Listen, if you saw me this morning, I mean I'm, I'm dripping out of the sauna and I'm gross. I mean it's disgusting. And my, my typical oldest is like oh my God. Like no. And it's, it's running joke. But guess what? Like I. There is. It is never the wrong choice to do nine minutes in the sauna for me. Never.
• 24:35
  Speaker B: No, never. And it never will be.
• 24:37
  Speaker A: It never will be. And I know that believing and knowing what that internal guide that I believe that all women and mothers and caregivers have, I really, really primally believe we all do. If you can get really quiet and focus on that in the belief that you have and then share that to help others and to illuminate their own paths that they're on, it's never the wrong choice either. Alongside your own self care and listening to that, that motherhood intuition, listening to your gut to do the next right thing for your children and to get out the word in your mission of what others are actually living feels like it will always come back to be validated.
• 25:17
  Speaker B: Yes. And it's healing.
• 25:19
  Speaker A: It is so healing. So healing.
• 25:22
  Speaker B: It is like going back to what you're saying because we don't want to take away any pain from any moms that will, you know, have a newly diagnosed child. Right. And going back to that numbing yourself like me even for example, I just kind of went straight in. You know, I didn't grieve, I didn't anything in my mind. I'm a teacher. I know what to do. Let's do this. And now when I look back, I realize how I would resort to alcohol a lot, you know, just to numb the grief process and tying, you know, this conversation to that hope. That is what I, I really want people to realize that These moms, or moms like us need that hope for even the ones that are coming and being diagnosed. Is there something better we can do than what we've been doing? Why are we just supposed to just accept profound autism, let it happen? Because it's not something I would accept if I knew I could do something about it.
• 26:13
  Speaker A: Right. That's right.
• 26:14
  Speaker B: Not because I don't accept or love my child. And I'm sure you're the same. Because I don't want to see them suffer. Seeing your child suffer is the worst pain any mother can ever experience. And we want to give these moms. It's not just about you or me anymore. These moms, future moms that will have children diagnosed with autism or even like severe or prone autism, more hope. And if that's kind of what they're focusing on, is there different things we can do, then why not?
• 26:41
  Speaker A: Yes, but, you know, actionable change and it's actionable things. And you know, I, I delve a lot into the Eastern philosophical teachings as well. And you know, suffering is a part of a lot of those that, that world's beliefs in their, in religion and the pain of being alive. Right. I think that with that also comes the desire to mitigate it in healthy ways by helping others. It's not necessarily about. Like you were. I were saying before, it's not about sharing my specific world or your world. It's about saying this exists. How can I get the message out that, that we as a, as a community of mother and women are to be believed in our realities and truth. And I think it's so this, the, the bucket of suffering then becomes. It decreases because we share and go, I see you and I believe you, absolutely. But stand vigil to that. Those people become the, I think the beautiful supporters of us. Right. The ones that say, I can't get in the room with you, but I see you and I hear you and I'm right here.
• 27:48
  Speaker B: Yes. And as a mother going back to intuition, I will say that to any mother. Yeah. I don't care, like what your journey is, if it's low support, needs, high support needs, whatever you're dealing with. And you're telling me, sharing what your intuition told you or tells you, I am going to say, I believe you. I see you because you are connected with, connected to your child. Our DNA is connected to our child. So to me, it's kind of like a. It's hypocrisy. Right. If I tell you my intuition regarding my child.
• 28:18
  Speaker A: Right.
• 28:18
  Speaker B: And you disagree with Me, because you disagree with. Either you politicize it, or, you know, you just simply don't like what I'm saying. That. But then you're going to want me to trust you regarding your intuition and your child. So I don't understand why we're not connecting that as mothers. Like, it's simple. I see you, I believe you. I don't deal with this. So I'm gonna step back. And if you want this, yes, you know what? Let them talk about it. Let them do more research because it applies to you, but it does not apply to me. I don't really agree. So I'm gonna sit this one out. That's all you gotta do, just sit it out. If it doesn't apply to you, don't let it offend you. You know, that's where I was really, when. The biggest lessons my mom would teach me is about compartmentalizing and not tying yourself to everything that everybody says. Yes, look at the big picture, you know, and don't let your feelings be on the driver's seat. Put them in the passenger seat and dissect a little bit. Why are they saying this? You know, you know what's going on with them. Don't always make it about you. And that has really helped me in being able to perspective take, you know, and having the blessing to perspective take from all different angles in this journey. I mean, as a teacher, I fought for a child who had low support needs, who. They didn't want to give him any support because he was, you know, getting really good grades. But he needed support when it came to, you know, his. His schedule, his meltdowns. But they're like, well, he doesn't qualify because he's getting good grades, so we don't need to label him. I fought tooth and nail for kids like that, too. So for me, I'm not just choosing to fight for profound autism. I will fight for you. And I know you're the same the way you need me to fight. If it's unjust, and that's. That's the key right there, if it's unjust, I'm going to fight because it's simply unjust in any shape, way or form for anybody.
• 30:09
  Speaker A: I think what you keep hitting on was going to say justice, and it's beyond just equity, and it's beyond just equality. It's about humanity meeting that person's humanity where they're at, and then, yes, I will fight for this. What. What needs to happen for that to be removed and to have the best possible outcome for that child.
• 30:32
  Speaker B: Yes.
• 30:33
  Speaker A: I'm so, so thankful for your voice. I'm so thankful for how you are using that to inspire and really just to get the realities spoken to in a way that is differentiating from a lot of the glossed over narratives right now and the stories that are being told and people tell themselves and to be bold enough to do so.
• 30:54
  Speaker B: Oh, yes.
• 30:54
  Speaker A: Stand by you. And I'm so thankful for this episode. I think it's going to inspire so many other mothers to speak their truth as well.
• 31:01
  Speaker B: Yes, absolutely. And I mean, the fight's not over because our kids are also very. There's a disservice in the medical system. So in me seeing that and observing that, that is where my heart is too, you know, and it's not just about outside services. Our kids are being severely neglected in the medical system more than any other group in this community. So there is just so much neglect when it comes to profound autism. It's not about choosing sides, and I know it's the same for you and I. It's simply about injustice where you see it, you know, and just like an er, right, if you go just to end with this, this is the way I see it. When you go to an er, you have to wait, right. If you have like, you know, somewhat of an emergency, you still have to wait. Who do they put in first? Someone who has an emergency, someone who needs more help. And that's the way, that's how I look at the world. Who needs more help, even if it doesn't apply to me. And that's where I fight. Yes.
• 31:57
  Speaker A: Well, I love your messaging. I love how you speak it, I love the way you articulate it. And it hits my heart so deeply as someone living a parallel journey. And I know that it's going to continue to affect thousands and thousands and thousands of others who get to take in your, your words and your life.
• 32:14
  Speaker B: Thank you. Same to yours. Same to yours. And I'm so glad I found you because again, you heal me as well. So I knew you is healing same. I see you.
• 32:22
  Speaker A: I see you, girl.
• 32:24
  Speaker B: Well, okay.
• 32:25
  Speaker A: This was a heavy, wonderful and a most amazingly powerful conversation. And we will definitely have another one of these with Liv. But until next, we will end that here on the Instance podcast.