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Who Will Care for My Child When I Can’t? Building a Future for Profound Autism with Nicole Milo · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hey everyone, welcome back here to the Inchstones Podcast. As you know, serving this community and population of parents, mothers and caregivers is the most foundational part of this platform. And today my guest is Nicole Milo, who has confronted these questions ad nauseam alongside so many of us. Her son Caleb is 23 years old. He spent 17 years in a residential school, hours and hours away from his family and home. And that transition to adulthood brought Nicole and what I believe are going to be so many of us with this infamous cliff and the system that simply did not offer the future that she wanted for her son. And you know, eventually Nicole stopped waiting for the solution to appear and built one. And I know that many of us are trying to forge those tributaries as well, to make the life that we desire for our children and an atypical situation is as beautiful as we can. So that became for Nicole, House of Hope, which was this micro residential model that was designed around something that should not feel at all revolutionary, yet it is revolutionary in our niche, which is giving adults with profound disabilities the opportunity to live safely and meaningfully with true dignity in their communities. So, Nicole, thank you so much for being here today on Inchstones Sarah, thank
• 1:21
  Speaker B: you for having me. I'm excited to be here and really get into it with you on some of these topics so we can help, help a lot of other parents.
• 1:29
  Speaker A: Well, I, I asked you beforehand, I said, you know, what's something you love to answer. And we're just. If you don't mind, I'd love to just dive right in because that feels to me that, that it nestles, it sits so next to so many of what we're, what all of us are going through is the emotional journey of where you are now, how that felt maybe at its, at its deepest inflection point and to support those who are like you and I on this journey and what that felt like emotionally. Yeah.
• 1:58
  Speaker B: So I think over the last few years this has become easier to talk about. But truthfully, there was years when I just couldn't go here, couldn't talk about the deep feelings and the pain and the grief and the things that we go through on a daily basis as parents of children with profound autism. And my son, who is 23 now, he is, he has a very complex behavioral profile and so he's very challenging even for the experts. So when he was little, he was so self injurious and so aggressive, we had to inpatient him in a psychiatric hospital. He was only five years old. And I felt like a failure as A mother. And I think that's something that we often don't want to talk about. But I could actually remember the conversation in the psychiatric hospital, and I'm surrounded by all these experts at this table saying, okay, this is what we think's best for your son's future. This is what we think's best. And I just looked at them and said, all I want to do is keep my son safe, keep him, keep him alive. Everything else we can work with. But I can't keep him safe. I need help.
• 3:10
  Speaker A: I think.
• 3:11
  Speaker B: So even just saying I can't do that as a mother, you know?
• 3:15
  Speaker A: Yeah. And I mean, to your point, the word that pops out to me is years. You said this is not something that you were able to metabolize in the moment, but that the years that have churned through you is also something that, that needs to be discussed because it does take a lot of physical metabolizing to even get to the point you're at now.
• 3:36
  Speaker B: Yeah, absolutely. And I think it's so traumatic, first of all, I mean, the, the, the diagnosis. But my son spoke, you know, he, he hit all of his milestones and then he had a massive regression, like overnight. So that was a loss in itself that we don't have often have time to process. We're just going in go mode. How do we get him the help, how do we get services? And we're just in constant go mode. And then you realize that despite all the odds, no matter how great of an advocate you are, no matter what connections you have, sometimes there is no solution. There is no place you can get your child into. You know, that's really the point. My breaking point as a mother was that I have to put my son first, I have to put my other siblings first, you know, and say, how do I keep them both safe? And the only solution on the entire east coast was a school that was three hours away from us. So having to come to that point in my life where I was like, I need to give Caleb a chance to be able to gain skills, to be able to potentially come home someday. And, you know, we didn't just leave him there three hours away. We were up every week. We were every other week. We were very involved. But the guilt and the pain as a mother to have to make that decision, I mean, I think I cried myself to sleep every single night for
• 5:00
  Speaker A: like years without, without a doubt. I mean, I think that I'm just, I, I'm visually thinking about like a three hour drive. I do a lot of that. To see my parents a lot with the kids. And I think that what is lost sometimes is how much energy that that takes alongside the metabolic processing of the emotional journey that you're not only, like, quite literally stepping on the gas.
• 5:21
  Speaker B: Right.
• 5:21
  Speaker A: Like, you are literally spending all this time. And I think about that when I. My kid's school is an hour away, and, you know, they're luckily transported by a wonderful company, and yet I am there every other week, spending hours and hours of time just to be present, just to have the active awareness of the choice that I consciously made. So I want to acknowledge that in your own journey, because it plays into why House of Hope also is what it is, because you're also placing this residential. This residential plan and idea that, like, we have to conserve some of the energy that it takes to even make these choices.
• 5:58
  Speaker B: So true. It's so true. You really have to pick and choose, you know, what battle are you going to fight today? I think a lot of parents are fighting just to fight because that's the mode that they've been in, and they're sort of stuck.
• 6:08
  Speaker A: Yeah.
• 6:09
  Speaker B: And I feel that the collaboration of saying, I need your help. How can I lay my, you know, sword down for a little bit and begin to trust people that are caring for our kids? That's a really hard part, is that letting go as a mother, the surrender and saying, you know what? These people know what they're doing. I've got to lay my sword down right now. I mean, it's still there. I can pick it up. But how do we work together? How do I learn from them? How do I grow? And that takes a lot of humility, I think. And that was something that. It was a struggle for me. I just took so much pride in being a mother. That was like my everything.
• 6:50
  Speaker A: Yeah. And I think that there's. You know, I'm a devout Catholic. I find that there's so much learning that I had to do about the. About the suffering and the struggling of those choices to let go and to let people help. I still do, let's be honest. Like, I still have a lot of. I still struggle with those decisions because of what it means to release. And like you say, let lay down your sword and allow someone else to say, I got this right now. So let's. Let's go from. Let's. Let's jump buckets here. So at what point did you say. Because it sound like, you know, you were strengthening in a lot of ways as you laid down, you know, assorting others when did you actually say, you know what? I'm gonna figure this out and how to do this in a way that. That allows for my family to thrive? What, what, what. What was that inflection point?
• 7:34
  Speaker B: Yeah. So, well, what had hap. Had happened over the 17 years that Caleb was learning at his school? I had gotten remarried. We. We had two more children. So I had a chance to really heal and get a second chance at a lot of these losses. So there was a lot of redemption and restoration occurring in my own personal life. And I think that helped to strengthen, you know, just that foundation, to say, okay, I'm at a point where I feel so secure now, 17 years later, that, all right, if I can't find. If I can't get his school from Massachusetts to come to Connecticut and set up shop, because I tried that for a few years. And so when I. When I realized, okay, nobody's coming. Nobody's coming to save me, I really. I've gotta figure this out. Time's running out. I was appointed to a task force, and I just started learning the adult service system seven years ago. So it was great timing because I got to learn what was about to occur before I was at that point of transition planning for Caleb.
• 8:37
  Speaker A: Yeah. So I'm going to pause you right there because that is something that is so heavy on my heart right now. And in. In ways I. I know that I have a. A massive number of listeners, New York, Jersey, you know, Connecticut, especially in. In this area, that need to know that it's okay to start learning well, well beyond when you think you're able to. So continue. Yeah.
• 9:00
  Speaker B: And. And, you know, it was scary. It was gut wrenching because it brought up all the feelings of my initial placement with him.
• 9:07
  Speaker A: Right.
• 9:08
  Speaker B: Five years old, having to find a placement for him now. He's done so well. He's been stable. Now I have to find a placement again. I'm going into crisis mode in my mind. I'm going into shutdown. I'm going into grief. I'm going into all these things and saying, okay, there is nobody coming to save us. We have to start doing this together. I've got to dig my heels in. So, you know, I think courage is a big thing because it doesn't mean you're not afraid as a mother of uncertainty of the future. It means that you're gonna press on beyond the uncertainty. And so after probably about three years of advocacy at the state level, I started to realize, I mean, we have major infrastructure issues all over the country in every state for Our children with profound autism. I mean, there is nothing. And I, I began to see that there's going to be a tidal wave. I began to see the numbers were going to, were going to skyrocket. And I learned that most states fiscally plan out three years. So at the three year mark, I gave myself a deadline and said, if I don't decide to do this now, we're going to be in trouble. So, I mean, I think people may have thought I was crazy or I was never going to be able to do it. I was like, well, I'm going to
• 10:22
  Speaker A: get a house across the street.
• 10:23
  Speaker B: Yeah. Yeah. I'm going to get a house across the street and magically transition my son, who's been in residential clinical placement for 17 years. I'm going to staff it. I'm going to become a nonprofit. I'm saying all of these things. I'm saying all of these things while I'm uncertain, while I'm scared to death. And that's the key, is that I want other mothers, other fathers to say, I might be afraid, but I'm going to do it anyway because that's what it's going to take. And we have to set our mind that failure is not an option because the barriers that it takes to get the budgets, to get the staffing, to get funding secured to create a nonprofit that's sustainable. And I started with no money, zero funds. So I tell people, if I could do this, anybody can do it. But it starts in our mind, it starts in our emotions, working through and just saying, I'm not giving up. We're moving forward.
• 11:20
  Speaker A: I mean, it's one of the, it's one of the greatest byproducts of a life that I would have never chosen.
• 11:26
  Speaker B: Right?
• 11:27
  Speaker A: It is. I say that to you because I hear it in your voice and I sound so, like, symbiotic with this. It is so necessary to go. The uncertainty is ripe. It's literally so ripe. And the fear is so dense. And I'm still gonna go, there's no alternative.
• 11:44
  Speaker B: Yes.
• 11:45
  Speaker A: It's one of my favorite sayings. Totally different genre. But the Israeli army, their term is en bre, which means there's no alternative. And en brei ra has become my sort of like Hebrew phrase, because it's. Exactly. And you are staying stating that to a T, is that there is no alternative even within the massive uncertainty. So, so, and then, and then you probably, as I'm, as you had started to see little flicks of it working.
• 12:13
  Speaker B: Correct. I started to see little glimmers of hope, of breakthrough. And, you know, it started with people in my local community just believing in what I was saying I was gonna do. Here I am standing up and giving presentations and telling people all the things I'm gonna do, all. Well, now I'm accountable. Now I'm putting myself out there, and I actually have to do it because I said I was gonna do it. And I'm not going to, you know, create that kind of a legacy for my children. You know, I've gotta follow through no matter how painful this is. And, you know, I just think that area of weakness. I know you. You just said that quote, which is amazing in the Israeli army, but there's a scripture that I hold onto with my faith, and it's. You know, he said unto me, my grace is sufficient for you. My power is made perfect in weakness. And when I am weak, he is strong. And it's so true, because in the very areas that have been the weakest, most painful areas are the areas where grace came in and it carried me through. It moved people's hearts to come alongside and help. I mean, putting ourselves out there is often the scariest thing, but. But it's also the greatest blessing to get on the other side of it. So
• 13:29
  Speaker A: I couldn't have said it better myself. You know, the house is really only the house that you and what you said, I'm gonna do this, and now I get. Now I have to do this, and I get to do this. The house was just part of the equation. I know that. I believe so deeply that we don't have to be adversaries with the government, federal, state levels and things like it. I. Even as a. You know, my specific thing that I do now is preparing mothers for their IEPs. Going. We don'. Have to go in so defensive to this. This is defensive. Posturing is not positive for anyone. Most definitely our nervous systems, so we can work together. So you. You tackled this in a way that was not defensive, that was collaborative.
• 14:11
  Speaker B: Yeah.
• 14:12
  Speaker A: Explain that process and what that looks like.
• 14:14
  Speaker B: Well, I mean, just to be honest with you, I am a hammer by nature.
• 14:18
  Speaker A: I think you're a. I think you're a. I think you're a velvet hammer, Nicole. You're a. You're a beautiful velvet hammer.
• 14:24
  Speaker B: I love you for saying that, but I. I think I've softened over the years, but, you know, we speak out of our own pain. So, you know, if I'm angry and bitter because I think the government has failed my son, which I think I did for many years, that's gonna come across in my advocacy. But if I start seeing the best in the, in the people that are in these agencies and they're there because they feel called to this, why else would they be there serving the most vulnerable?
• 14:54
  Speaker A: What would be their cause for all of us? Like. Like, no one just goes, you know what I'm gonna do for my life? I'm gonna tackle this. Unless you have a deep, deep seated reason, that's it.
• 15:04
  Speaker B: And they're just humans. And you know what I started to realize over the years? Building the relationships, that they're hurting too. They need encouragement too. You know how many heartbreaking stories that they have to hear on a daily basis. And you know what they really wanted? A mother that they could partner with and see something come to fruition. But that was a trusting relationship that had to be built over years. And it's not just, what can you do for me and my son? It's what can I also contribute to this? What can I bring to serve beyond just my son? And that's the key is figuring out how we can help our school districts, how we can not just be the takers, not just be, you know, the hammers, but be, say, you know what? Tough. I'm not gonna settle on these things, but I'm also gonna compromise in these other areas or help you. How can I help, you know, another family? How can I help, you know, just be available and pour out. We can't always be taking. Yes, I think that's key.
• 16:10
  Speaker A: It's so, so, so very much. And I can only imagine, though, at that cliff age when you had learned so much about the advocacy, you know, where, where were the points where you thought, okay, I'm gonna give a little bit on this, but I'm receiving so much for not just my son, but for the community at large. Like, how did that ha. How did that, what did that actually look like for you?
• 16:32
  Speaker B: Well, I mean, I, I think that there are situations that we all go through. Let's talk during our school years, Right. Because we, we're all sort of traumatized by the IEP process. You know, you help parents with that process. And I do a lot of consulting. I go into IEPs with families as well. But I think if you are level headed emotionally, you can be firm. But, you know, being level headed and saying, okay, where's the humanity in these professionals? You know, where's the humanity in this situation? And let them know that I'm with them, we're a team. I'm not against them, I'M with them. And could I have taken things far from mistakes that were made with Caleb's, you know, educational process? Absolutely. And I think if we go in with the mindset, always just my kid, just his needs, guns a blazing. You know, I think that's the wrong approach. I think the approach could be where are my hard lines that I'm not gonna compromise on for my son and where are the areas I will compromise on? And it's a give and take, as you know. I mean, for Caleb, I think one of the big things was I said, you know what? I could ask for transportation three hours back and forth, you know, for. For home visits or holidays or whatever. And I said, you know what? No, I'm gonna take the responsibility, I'm gonna do the driving. And you know what? It helps everybody. So it's a win. Win.
• 18:05
  Speaker A: It's one of those things too. That's a great. That's such a great example. Cause for some people that might be. They're non negotiable. But for others that might create a real sense of duty and like, loving responsibility for their own presence and saying, you know what? That drive actually gives me a lot. Or I realize that that drive doesn't impact me and my family as much as it might for other families. I think that's such a great sticking point for us to remember that the things that are hurdles for one maybe aren't hurdles for the other. So that's where we need to concede and say, what best serves a budget here for the community that I'm looking to serve. I can, I can do that. That's not a big ask for me.
• 18:41
  Speaker B: Absolutely. Absolutely. And I think, you know, I'm gonna go here because this is an area that was very painful for me. But, you know, there was a time where people in the community thought that my son was taking so much of the educational budget up, and then they become attacking and judgmental. And that was so deeply painful for me.
• 19:04
  Speaker A: Gosh, yes.
• 19:05
  Speaker B: Probably one of the most painful things, because I had worked really hard to get funds to come into our school district, which people didn't realize. And I was like, wow, you know, they just really don't know. They just really don't understand the bigger picture here and that he's, you know, what most would consider institutional level, and, you know, where's the compassion? So I think being able to push through those things in the school years strengthened me for the transition into adulthood. As difficult as that was, it could build my capacity. Yeah.
• 19:39
  Speaker A: And I think that, you Also referenced something here which is you never know what the pain points of others who are pointing the fingers are. And to your point about humanity, and there's a soul behind each one of these people. You never know what they're. And so there's a lot of empathy that can be given even within the pain of being felt. Like you're being thrown all these different, you know, tisk. Tisks at you for taking or something. But you realize that there's, there's so much more behind the people that are. That are saying that you could have some empathy for them while still standing firm in what you know to be true for your own and own child. So, so yeah, you, you, you ended that. Your comment was saying, you know, getting you up to that point. So the cliff happens. What do you. What, what, what is. What is on the horizon? How. How did that look? What did the support look like? And how did you get all of that?
• 20:28
  Speaker B: Wow.
• 20:29
  Speaker A: That's a loaded.
• 20:30
  Speaker B: Sorry.
• 20:30
  Speaker A: Wow.
• 20:31
  Speaker B: You really wanna know? I'm just kidding.
• 20:33
  Speaker A: Yeah. No.
• 20:34
  Speaker B: So, you know, it started with gu. I think guardianship process is a very sobering experience. As a parent, you're like, wait a minute, my kid's not getting better here. This is lifelong. My kid's not getting better. And now his educational supports are gone. There's no federal idea to protect him. There's no, you know, parent rights. My goodness, what are we gonna do? Because this is what has sustained Caleb. This is what has helped him thrive without having to be in an institution. So, you know, all the things go through your head, okay, do I bring them home? What do I do? What does that look like? Where, you know, let's explore agencies, let's explore group homes, you know, And I just started exploring what was out there. What are the different models? And I thought, you know, if I could replicate the services he was getting in Massachusetts, which was 247 embedded ABA clinical supports around the clock, framed as functional life skills in natural settings. You know, there seemed to be barriers within state agencies where they had not seen. They were so scared of the institutional abuse that has occurred and is horrible. Yes, but that they had thrown the baby out with the bathwater and not thought about building clinical infrastructure in natural environments in home, you know, micro residential with family involvement. So I said, you know, why don't I combine the clinical with my loving Italian family, where we help each other out and we just kind of get it done and all come together. Maybe this is the solution. Because some of the pain points in getting services for your child Once they transition is direct care staffing.
• 22:24
  Speaker A: Right?
• 22:24
  Speaker B: Yeah. I mean, it's major. There's no requirements for autism training. I mean, could you imagine entrusting your child with somebody who has zero autism training?
• 22:35
  Speaker A: Well, I think, and also too looking that, that future vision that you think, you know, these, these children become full grown adults. Yes. So the tr. The fact that, that, that, that is still such a question mark, that, that sticks in my gut, that really sticks in my gut. And I can only imagine how much greater that sticking point grows as your children physically grow.
• 22:58
  Speaker B: Yeah. I mean, and I'm not a control freak. You know, I would happily surrender, you know, care to Caleb, to people that I trust, say, okay, I trust you. But I'm still his mom. I'm still, you know, involved. I have the say in things. But I think what it is, is it feels negligent. It feels negligent as a mother and a parent knowing full well what's coming. And there's no supports in place for our children once they hit adulthood. You just can't sleep at night trying to put them somewhere where you know that they're vulnerable. And so I think building, building the micro residential model started with, if I can't have him in my house with the other kids and his behaviors are so, you know, challenging, what's the closest I could get him? And you know, we can cover the staffing shortages, we can jump in for emergencies. Absolutely. And so just, just learning the, the models out there, finding the pain points and saying, okay, where can I take responsibility and, and, and be a bridge until I build that infrastructure? Years later, I'll take it on. I'll, you know, my husband will help come alongside of me. I mean, yeah, it's just building that support network.
• 24:18
  Speaker A: You, you almost answered my, my next question. Cause I, I'm thinking here, okay, you know, I've got a typical 13 year old. I got, you know, 11 and a half year old and an eight year old with, you know, my profound autistic children. Okay, what am I, what am I realizing now to, to build that? And I think that you're. That that's just such a beautiful answer. Is that like, start creating those buckets of what your family works for you, right? What, what works for you and your family? And I think that that's a phrase that any family, you have typical children. I remember having just a typical toddler and another friend of mine would go, well, that doesn't work for my family. That's an okay thing to say. And I love that you're sharing that, like, start to build that, like, ripe understanding of what does work for you and your family. Because what can you actually do now versus waiting to discover how complicated it would be until when they're 21.
• 25:07
  Speaker B: Well, and I think that's it right there is that a lot of parents have lost hope. They're so jaded, they're burnt out, they're tired, so they don't believe it's possible to dream again.
• 25:20
  Speaker A: That's right.
• 25:21
  Speaker B: I get a little emotional here, but it's true. And, and, and I'm. I'm gonna host this workshop next week, and it's developing your vision because there was a question that I started asking parents who wanted me to consult with them on transition and adult services. I said, what. What do you envision as your best life for your child? And they would start to cry. And many of them would say, I don't know. Nobody's ever asked me that question. I'm just, just surviving. And I'm like, I want you to think about what is the ideal situation. For me, it was having my son so close to me. For me, it was still being able to have that family connection and that family involvement, but still have high level staffing supports and clinical supports and, you know, safe environments for him. The environment needed to be custom for him, but it's believing it's possible. That's where it starts. That's it.
• 26:18
  Speaker A: And trusting yourself, you know, I, a good friend and fellow podcaster, Lena Curie, I'm not sure if you're familiar with him, does autism parenting secrets, and he talks about this a lot. He says, I'm not here to coach you onto what I believe is right for your child as, as they age. I'm here to listen and integrate. What you believe so deeply is best for you and your family and I think, and the power that that puts back. I try to do the same thing with these mothers that say, well, just come in with me to the iep. I can. I mean, I can, but I will never do as great of a job as you will to voice and advocate for your. For your child. So I'd love that you're doing the same thing for, or have done that for Kayla, but it can inspire others to do so. What do you really want?
• 27:02
  Speaker B: Yes, yes. And helping almost walk alongside that parent and say to them, look, I've been here. Maybe not the same situation, but it's. There's been some dark nights of the soul. Yes, but you're not alone. And I promise you, you can get through this on the other side. But you have to believe that that's possible first.
• 27:23
  Speaker A: Without a doubt.
• 27:24
  Speaker B: Or you're stuck there, you know?
• 27:25
  Speaker A: Right. Without a doubt. Nicole, I can't thank you enough for this conversation. We could talk for three hours about this. So I think there's a follow up one that we can do that get into more nitty gritty. But for right now, I think what stays with me so much is that in your creation of the House of Hope for Caleb, it began with the question that so many of us ask are, who is going to care for my child when I can't? And your answer wasn't simply to find a place for Caleb. It was to think differently about what that adult life could actually look like. And starting that process well, many, many years before it actually happened. Because needing that 27, 247 support shouldn't feel like you're giving up what works best for you and your family. And I want to challenge anyone listening today that those of us that are raising younger children with profound autism, adulthood can feel so impossibly far away right now until suddenly it isn't. And your story is a strong reminder to me, and I know will be to so many, that we need to start having these discussions and conversations long before the cliff, because parents should not have to reinvent an entire system every single time.
• 28:35
  Speaker B: Yeah.
• 28:36
  Speaker A: Most of all, I think that, you know, you're showing and being such a beautiful, lived example that preparing for the future isn't about loving our children less. It's building a life that continues to hold them and continues to be what you say, the conscious curation of the community that works best for you. So thank you for sharing your story and for turning your own family's need into one that can be. It is not could be. It is such a beautiful model that we can create more choices for all of us.
• 29:06
  Speaker B: Thank you for having me, Sarah.
• 29:07
  Speaker A: All right, we're going to have Nicole back. This is not. This is just. This is phase one. This is episode one, guys. All right, everyone. Well, thank you for listening today here. And until next time on the Inchstones podcast,