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The Cost of Being Misunderstood: Caregiving in Severe Autism with Autism Mom, Jaime Hrobar · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: He has struggled his whole life. When I say that he needed to be hospitalized for extreme self injury and aggression, I'll break it down for you. What that looked like he was hitting himself on average 40,000 times a month. So on average 10,000 hits a week to his own body. That's not including the property destruction that was going on and the aggression, the frustration of not being able to communicate. He's 21 years old and he needs assistance with all daily living skills. And he needs help showering, using the bathroom, preparing meals, getting dressed. A car is coming that it's going to hit him. He does. He recently burned his arm on a pot.
• 0:41
  Speaker B: I don't, I don't laugh. I. Generally speaking, if a typical mother of only typical children were saying they there's a dis. They're suspended in the disbelief that this is actually reality.
• 0:50
  Speaker A: Yeah.
• 0:51
  Speaker B: But I know it's true. Hey everyone. Welcome back to the latest episode of the Insurance podcast. One of the things that I love most about doing my own advocacy work and diving into this world that none of us ever saw coming years before motherhood is that the connective realities of other moms that are doing similar work side by side, different parts of the country and the world never ceases to feel so connective, so binding. And what I always say, I believe is the best part of this global village we live in. There's so many negatives to like our accessibility to everything.
• 1:28
  Speaker B: The special needs mom community and specifically the profound autism world. It is absolutely the reason why we feel a sense of support and the humanity behind our children in our lives. So today I have Jamie Robar here and she is a fellow mother of a 21 year old. Is that right? 21 year old son.
• 1:46
  Speaker A: Yes. Yeah.
• 1:47
  Speaker B: Who has profound non speaking autism as well like my Millie and Macdu. And she is an author and writer and advocate and, and I'm so lucky to have her here to be a part of Inchtones and share her story.
• 1:58
  Speaker A: Thank you so much. I'm so grateful to be here. Thank you for having me.
• 2:02
  Speaker B: Of course, of course. Well, I always say inch Jones over milestones hits home for most people in our world, but it also hits home for most mothers as well. And I believe that you do have a typically developing child too, right?
• 2:15
  Speaker A: I actually have a 13 year old who is on the lower end of the spectrum. So I have, I have both. Yeah.
• 2:22
  Speaker B: Okay. So you're experiencing motherhood in its wide variety of array of how our children present and who they are and showing up every day. What would be the way that you lead from an inchtone's perspective in your.
• 2:35
  Speaker A: Motherhood, it has changed and evolved over the years, I would say. I think right now where I'm at is meeting my children where they are and embracing the strengths that they are exhibiting. My younger son has just leaps and bounds from where, from where we started. We met him where he was at. He was struggling at the school that he's been at for the last few years. Lots of conversations with the school, trying to get some more supports in place. He was just having a very hard time. And so we stumbled upon this other school that is just perfect for him. He's excelling and I think not being afraid to make changes when you need to make changes and really advocating for what, you know, your child needs. He's, he's doing beautifully now. They have a different teaching style. The other school just. The teaching style was not working for him.
• 3:29
  Speaker B: You know, I think so often we don't. And this is where my platform lands a lot is like we don't even realize how conditioned we are to what we thought or expected to happen, even with our children that demand higher support needs. Right.
• 3:47
  Speaker B: I had to become, I had to really uncondition myself from being a loud advocate. Like, oh, it's okay, we'll. I'll figure it out for her or I'll do this. No using your voice in a way. And I, and I love that example you just shared. Like, that wasn't working for your son. And it's okay to, to, to change. It's okay to pivot. It's okay to, to try something new. I think that we, I don't know. I'm 42 and a half years old and I always say, growing up in the 80s and 90s, what did they, what did they serve me up to think that like everything was going to be the full house level of perfection. Right. You know, and how to change that in my own motherhood and know that I can ask for things. So I like that you share that about your, your son as well.
• 4:29
  Speaker A: Yeah, I, we would pick him up from school and, and he would just be so disheartened and I, I wasn't sure how to help him. And no amount of, of meetings and while the teachers were trying to be supportive, he just needed to learn in a different way. And I'm very grateful for. It was actually his pediatrician that suggested this little hidden gem of a school that we didn't know anything about. It's 45 minutes from our home and it has turned out to be, I think probably the best thing that's ever happened for him, aside from his early intervention services, where that was just such a gift and he did beautifully and was mainstreamed very early on. He's super intelligent, very creative, plays the guitar just from, from listening, no formal training, just, just amazes me really. He's a history fanatic, a little science wizard.
• 5:22
  Speaker B: Are you sure he's not my partner's like, alter ego? This is like I'm like gonna have my de facto husband come in here and he'll be like, are you sure this isn't him? I mean it's the same. The, I think the more that we talk about these innate strengths and the abilities, I always say, of autistic individuals and as mothers of children watching that evolve, it's become, well, for me, it's just such a beautiful part of this journey that I never ever in a million years would have thought would have emerged from what can a lot of times feel like the trenches, right? And feel like these, these small, small wins aren't stacking up or they aren't leading down the path that you want. And it's actually building something so much more beautiful in a, in a part of the terrain and map of your life that you never, ever saw possible.
• 6:11
  Speaker A: I've really had to learn to be much more open minded and, and in doing that, the doors just continue to open for our family and I'm incredibly grateful for that. I was very used to be very close minded about a lot of things and just, you know, being willing to, just to hear about some new things, new schools, new services, new programs, staying open to that really has set us up for success.
• 6:35
  Speaker B: I was talking to someone else earlier. Why do you think. And I, and I do want to focus. I want to get to your community. You're homebound and healing, correct? Is that right? I want to talk about that in a second. But what do you think is the reason why we as the mothers and caregivers have to like, so proactively seek these out? Like, I had a very similar experience when you were saying about like this school that your son's in now and you're like, I didn't even know it existed. Why do you think that that's part of like the structure in this world of autism education and then the community, like, we don't even know what, we don't know until someone says something. It's like there's never, there's no central intelligence center for us to go to and go, I live here. I want all the possibilities and how can I leverage them to my, the success of my child. It seems much more organic than in other parts of society that we have to like really do the grit in the work.
• 7:32
  Speaker A: For sure. I, I have to say I've been doing the grit and the work for, for about 20 years now. When, when Jim was diagnosed in.
• 7:43
  Speaker A: It was 2006. It was 2006. And so. Sorry. It'll cut that out, right? Yeah, yeah. It gets, it's emotional, you know, but.
• 7:55
  Speaker B: It'S so beautiful though. That's what's part of all this.
• 7:57
  Speaker A: Yeah. Yeah. Okay. Sorry. Yeah. So I' grit and the work for, for almost 20 years now. And I am so grateful certain things were placed in my life along the way. Initially I had seen this video that, that had come out and had been given to me. It was a DVD that NBC had put out, was called Autism the Hidden Epidemic. And on that video there were, was the CEO, I believe at the time of NBC and his grandson had been diagnosed with autism. And so he was talking about different doctors and schools that were, you know, were, were leading experts at the time in the country. And it's just like you said, you know, as, as parents, we have to seek these things out. And I am so grateful that that DVD was given to me.
• 8:43
  Speaker B: I know, right?
• 8:44
  Speaker A: I found, you know, these world renowned doctors and experts and schools and I just, I went after it. I mean, I just went after it. I wasn't taking no for an answer. We saw many of those doctors and my son actually wound up going to one of those schools and it has just been fighting, going to experts all of the time. We have been so fortunate to have so many of these professionals placed in our life. I realized that not all families have that benefit. We've had attorneys in our corner. Jim, my older son, went to a specialized hospital for four and a half months in Baltimore, Maryland where he was hospitalized there for extreme self injury and aggression. And he has just seen so many incredible experts in his 21 years. And I'm just so incredibly grateful for that. But it has been through fighting and seeking and saying who's the leading expert in this? It is up to us. Unfortunately, as the parents, like you said, I don't just type something in online and there we go and do all of this. Right. I mean for James to go to Kennedy Krieger Institute, which was the hospital that he, that he was at for four and a half months, his self injury and aggression had reached such a dangerous level. I mean it had been dangerous for A long time. But it got to a point where I just. With all of the therapists and everything we had going on, like, it still wasn't. We still weren't making it, you know, it was very dangerous still. And I remember I quickly typed online, who's the leading expert in self injury and aggression? And I stumbled upon this doctor and I, you know, I stayed up all night emailing him and I wasn't sure if he'd ever get back to me. It was a shot in the dark, but I just could not allow this to continue. I was so terrified for my son and our family. Very scary, dangerous situations. And that doctor responded to me within two hours and he helped me for quite a while to get on the waiting list and get things ready for the hospital. And Jim did go to that hospital and I can say with all sincerity that they saved his life and they saved ours. There's no doubt in my mind.
• 10:56
  Speaker B: Yeah, I just got full, full chills from that because I think one of the things I always love to hear in sharing stories of other families that are in similar situations and then your specific example of, you know, Jim going to the hospital and being, being in, in there for so many months is that we are all.
• 11:16
  Speaker B: We are all given the child in front of us to lead them, to help them, to guide them, to aid them in their development of their body, souls, minds, emotions, all these things in a way that's so specific to the child that you actually have. And I think that part of the community that I always hope to just like to from the ground up, like, you know, from like not top down leadership, like bottom up style, saying it's already in you to do that. And I think that the strength that I hear you even just in telling the story is what I always want to like shout by a megaphone to all mothers is like, see, it's like, it's not that Jamie's story or Sarah's story or I talked to a woman named Desiree this morning and recorded with her. We all have such wildly different experiences with our children. They might have the same label, they might have the same exhibit, some of the similar behaviors, but those exact parts and chapters that ask of you to be the best mom that you can be for Jim is so yours and it's so beautiful. And it's never something that can take away or be replicated by me. But to, but to sit so close to the story and to go, she did it. I'm capable too. And I don't know what that curve that who knows what it's going to be for me with Millie and Mac. But I know through stories. I know through that lived experience, I know through witnessing and standing such close vigil to other mothers in this situation that I, you and every other mother out there with similar diagnosed children, it is within our bandwidth to do so even when we think we could never. How could I do that? Like, how could you stay up all night emailing? Because that's what it means to be a mother. Leading with unconditional love and maternal instinct.
• 13:03
  Speaker A: Yeah. I mean, that makes me think of. Yeah, I get choked up every time I talk about it, because when he was. When Jim was hospitalized, you know, I. I got on a plane every single week. You know, I would spend half the week in Baltimore with Jim while he was at the hospital. I stayed at the Ronald McDonald House, and then I would spend the other half of the week home with my other son. And people say, well, how did you do that? I couldn't do that. You know, you do. You just do it.
• 13:27
  Speaker B: You just do.
• 13:28
  Speaker A: You just do.
• 13:30
  Speaker B: Well, like, again, I always wonder, like, why did we get to the point where people go, I don't know how you do it. Gosh, I could never do it if I were you. I'm like, no, I know. Yeah, you could. I know that you could. Like, I. I have. You know, again, everyone's life is so different in, like, the. The plans and the routines and the schooling and the towns and all these things. You still would do it. And I think that there's something so deeply feminine and divine and sacred in the power of harnessing that even through something that I. Listen, I was pregnant with Millie, living the life on the Upper west side of New York City, having the white picket fence dream, just grow and grow. And I always say, then God said, you know, hold your beer and hold it again. Like, hold. Hold it twice. Although I'm on the similar. I'm sober as well, so I don't even. I use that. I use that as an example. But like dad said, hold my sparkling water. But it's really true. It's so interesting how every woman would do so. You would. Everyone would rise up. Absolutely, Absolutely. So talk about your community. Talk about your community that you. That you built and how that all began and.
• 14:41
  Speaker A: Sure. Thank you. Yeah, I started it, actually, around the time that we were prepping Jim to go to Kennedy Krieger Institute. Things were. Things were dangerous and scary and lonely, and I knew this was going to be happening. We were waiting for a bed, and I Just sort of wanted an outlet to be able to talk about it. And you know, back then, not everybody was talking about severe, profound autism. And so I started talking about it because people would say, I don't believe your life, like when you describe some of these things. I know, yeah, so. So I started that and it. It started real small. And I just kind of just would say, what's going on in the house today and what we were experiencing, or take videos of him with his therapist. And I think a lot of people were interested. We had a special room in our house for therapy. I had started a home program for him. So people were kind of interested in that. And it has grown now. I get messages from all over the world. People asking me about extreme self injury and aggression and property destruction. And it has put me in touch with so many other moms and parents and educators and advocates and other individuals with autism. All of these different people have now become a part of our, of our journey and of our community, of our page. And I just. It never ceases to amaze me. It just started from this, this little, you know, I just wanted to talk about it and it's just beautiful. I'm so grateful.
• 16:08
  Speaker B: What are your thoughts? I mean, because I. I wonder a lot. And I'm sure that you've been the recipient of this too, of people saying, like, it's. I understand that's your reality, but like, that's so much to share. Like people aren't prepared for that reality or, or that's too much. Maybe, maybe, maybe don't be so truthful, or maybe don't be. Maybe don't lay it all out there. Because I'm someone, I think even in beginning in Stones, you know, I mean, I was writing for years, but like really doing the work about two years ago, and I thought, I have to share the underbelly too. I have to talk about the feces on the wall. I have to. And it's not because I'm trying to get a shock and awe response. I just want reality to be as. As present as my absolute love of the little twinkle in their eyes when they put the Duplo block on the. On top of the other one. I want both. And I want the curiosity and complexity to be understood around both. Have you experienced any of that too, of people being like, well, that's a lot, Jamie. Like, like not everyone, not everyone wants to hear all of that.
• 17:20
  Speaker A: Yeah, so I've had moments of some of that and then other times, no. Things have changed over the years on the Page, initially, I wasn't always thinking about. And I'm just being honest. I wasn't initially, always thinking about what if Jim read this page someday. And so there have been times I've censored myself more than others. I always do try to think of his. His dignity and what he might want me to talk about. But. But much like you, I do want to. I want people to know the. The real side of this. That it's not just, you know, he. He's non speaking and that we watch Toy Story 24 hours a day. Right. I mean, we've had holes in our walls. I've had concussions. I've had my jaw dislocated. It's. It's serious. And so I do want people to know that I try to handle it carefully, but I don't shy away from it sometimes. I have had some painful comments back towards me, and I just try to handle those with dignity and grace as well. But again, at the end of the day, kind of like you, you know, it's my page, it's my story. It's our journey, and we're gonna just share it, how we feel comfortable and just continue to move forward. And I think it will just keep evolving as Jim grows. And I don't know what behaviors are gonna come up or what we're gonna be dealing with, but yeah, I think people need to know. I mean, my son is 21, and every single morning I have to strip his bed. You know, the entire bed has to be stripped. And I mean, down to the mattress pads and the bedding, the mattress pads, the pillows, you know, all of it. I do like nine loads of laundry a day.
• 19:02
  Speaker B: And I have a speedy queen. I don't know about you, but like the speedy queen and from New York and like the Laundromats. I remember asking like a little Asian man being like, what is the most durable, like, washing machine.
• 19:14
  Speaker A: I'll tell you which ones the. The old ones get. The oldest ones you can buy. The oldest, Most.
• 19:20
  Speaker B: Most analog.
• 19:22
  Speaker A: Yeah, yeah.
• 19:23
  Speaker B: Like the Japanese, like Seiko, whatever it is. Like, it's like the. Yeah, it's the most basic of ones. Isn't that so interesting when you think about that too? It's trying to reinvent the wheel sometimes on the. On. On it all. Even when it comes to the therapies and the. The routines and stuff. It's like our children are so beautifully simple in the things that are hard for us sometimes that we get to find. We get to think of the most simplest way in which to handle it and do it again and do it again. And the washing machine is no different. It's like I could. I am totally living your life, without a doubt, parallel. Just here in New Jersey.
• 20:00
  Speaker A: I have an extra one in the garage. You know, that's right. Just as a backup because we can never be without a washing machine for a day. You know, we have to have multiple iPads.
• 20:10
  Speaker B: Yeah.
• 20:10
  Speaker A: You know, backups, charging stations. We can't be without those for a day. I mean, I, at one time I had done a post and it had performed very well because I was heading to Charleston with a stack of iPads because I just save them up, you know, like when they're all.
• 20:25
  Speaker B: Yeah, me too.
• 20:26
  Speaker A: I mean, yeah, it's a drive. So when they're all busted, you know, Beth will go take them. And so many people could relate to that. You know, so many people were like, yeah, that's us too. Or when I talk about evacuating during hurricanes, you know, people. Because people get interested in that because our life is so. It has to be just so here. And when you have to evacuate for a hurricane, I mean, just putting him in a different environment, in a hotel.
• 20:54
  Speaker B: Oh, yeah.
• 20:55
  Speaker A: Here with power outages, you know, it's just, It's a different life. It's a complex life. Yeah.
• 21:02
  Speaker B: Do you think that the current modern day dialogue and the. Maybe what I hope is more of an illumination on profound autism, you know, in this country, in the world. I always say that I'm politically homeless only because I don't want to kill the messenger. And I think that the systems that we have in place right now, maybe, just maybe it's good to destroy and create something new. Maybe there's. It's going to be really difficult for a number of years to destroy what the general narrative around autism was to allow for the truth, to build a better system for our children based on the realities and not the stories we told ourselves or the population or the country told ourselves. Where do you feel hopeful? Where do you feel that there's a lot of questions still to be asked? Do you sit in the idea that curiosity is always a good thing or that we should just march on and use what we have right now that's available?
• 22:03
  Speaker A: That's a tough question.
• 22:04
  Speaker B: Sorry, I don't mean to, I don't mean to go deep. I just, I think it's a really, I think it's. I think we're, we're at a very unique time right now as mothers with children.
• 22:11
  Speaker A: That we do, we are. And I Think I'm in a unique situation. And, and I recently posted a video about that because it's hard for me sometimes watching, watching the news or you know, watching the autism community on Facebook and Instagram and all of that. You know, there's, there's two camps, right? The ones that say my child's autism is their superpower. And then there's the parents of individuals with profound autism. And I'm the mom in the middle, right? I'm the mom in the middle. I've got, I've got both sides. And I'll be honest, you know, if, if I could take away Jim's autism tomorrow, would I? You bet. You know, he has struggled his, his whole life. When, when I say that he needed to be hospitalized for extreme self injury and aggression, I'll break it down for you. What that looked like he was hitting himself on average 40,000 times a month. So on average 10,000 hits a week to his own body. You know, that's not including the property destruction that was going on and the aggression towards me. The frustration of not being able to communicate. He's 21 years old and he needs assistance with all daily living skills. He needs help showering, using the bathroom, preparing meals, getting dressed. He doesn't understand if a car is coming that it's going to hit him. He doesn't. He recently burned his arm on a pot even though we were trying to keep him away from the stove. Right, Exactly. Yeah. You know, I don't laugh.
• 23:46
  Speaker B: I just say that they're so that when you share that, generally speaking, if a typical mother of only typical children was sitting they. There, there's a dis. They're suspended in the disbelief that this is actually reality.
• 23:58
  Speaker A: Yeah, so.
• 24:00
  Speaker B: So I know it's true. I'm like, yeah. I'm like, yeah, we, I looked over, I mean I, I had one glass thing on the counter a couple weeks ago and I was like, it's too quiet. And my son, man, I mean he was on there and I had to, I mean it was like a cartoon. I like caught him as the thick as the glass thing was falling and he was falling. I was like, oh my God.
• 24:18
  Speaker A: Yeah.
• 24:20
  Speaker A: That'S the common phrase in the house because I mean, Jim is non verbal but he's not quiet.
• 24:24
  Speaker B: Correct? Yes.
• 24:25
  Speaker A: There's a lot of vocalization and all that. Or you know, the iPad's going and what? And then all of a sudden you just go, it's too quiet, it's too quiet, too quiet. And then it's. He's either he's either fallen asleep or it's gone south. Something has happened. So in terms of that, you, my younger son. I mean, his quirks and all of that. I mean, he's never met a stranger. You know, it doesn't matter if you're 6 or 60. So they're just so different. And so I am in the middle. Do I think that research is important? Absolutely. I also think that, you know, both sides, in my opinion, need to band together and continue to fight and advocate for services. You know, because early intervention benefits all families. I don't care where you are.
• 25:16
  Speaker B: Exactly. Yeah.
• 25:17
  Speaker A: Right. So we need that. But we also need continued respite support for families and pay these respite workers what. What they're worth, because, you know, it's not a glamorous job and burnout happens and. And we. We cycle through. Through caregivers. You know, I'm grateful that that is an option and is provided at times, but there's such a shortage. I mean, we went for over a year without one recently.
• 25:41
  Speaker B: Yeah.
• 25:42
  Speaker A: And then in terms of. For individuals like my son, for individuals with real severe, profound autism, and I don't mean to, like, draw that line. I'm not trying to do that because I want us all to come together as a community. You know, Jim has aged out of services now.
• 25:57
  Speaker B: Yes.
• 25:58
  Speaker A: He's 21. He had. He went to a school in New Jersey, a private school in New Jersey for individuals with autism for 10 years. Then we moved here. We started our own program for a while because that's what was appropriate for him. Then he went on to have therapy. He was at an ABA clinic for years, and he did beautifully there. But Jim still has profound autism, and like I mentioned, he needs assistance with everything. So now that he's aged out, there are only a handful of day programs here in our area. And you're not going to believe this, but I'm going to say it. I'm going to be honest. One of them was going to accept him. We were set to go. We were about to start practicing going, and essentially they told me he was too disabled to go, and he wasn't. They weren't going to be able to take him after all. And this is a program for individuals with disabilities. Right, Right. And. And I had almost.
• 26:55
  Speaker B: It almost becomes like, you're like, what? You almost. I don't know. I started to do this, like, thing where it makes my older daughter laugh. I'm like, what world am I in? Because I'm. I'm so baffled that I'M not baffled. But it's like this happens. You're like, but this is the, but this is a program in a day program specifically for a descriptor of the child that I have. Yet you're saying it's too disabled.
• 27:25
  Speaker A: It doesn't make, you know, that's what essentially what they said. And I had even offered to provide a therapist to be with him. You know, what do we need to do to make this work so that, you know, I'll do it. I'm a doer, so what do we need to do? And the other. And so that did not work out. And then there are two others that are, that are willing to have him one day a week. But again, it needs to be with proper supports and we've not been able to get that in place just yet. There's, there's also, I would love to see hopefully in the near future more group homes and residential placements that are safe and can handle these types of behaviors. There really aren't many. There's none in our area. And I can tell you at one point a couple years ago, things got very dangerous here again for a little while and I was going through a divorce. I was a single mother again and I was unable, it was unsafe for a little bit. And I had to make the gut wrenching decision to place Jim in a residential facility. Mm. There are not many. It was three hours away. I'm grateful that Jim's father and I, you know, we went to visit him frequently, but they were starving him. So Jim lost £40 in that facility. We, we were visiting. Once we started realizing what was going on, patterns.
• 28:50
  Speaker B: Yeah.
• 28:50
  Speaker A: We figured out what to do. But you know, a lot of families are not able to visit or. Yeah, I won't get into all that. But that's, that's other family stories.
• 28:57
  Speaker B: Well, but that's, but that's, but you're, but what you're expressing though, and I get I he to be a bridge to this, is that when you're in such a reality with children with profound, non speaking, severe autism, there's anxiety for the future. There's anxiety for all these things after they turn 21 or off the, you know, when they, when they fall off the cliff, those realities are still so, so true. We have to talk about them. We have to. Because as painful as it is for me to think about down the road, I have to.
• 29:27
  Speaker A: Yeah.
• 29:27
  Speaker B: And as the mother of a three year old who's diagnosed, who's in the bartering and grief phase, that this is even Their life still, they have to think about this and don't spend the most time, but absorb the stories of women like you and Jim as your son. Absorb the stories of women like me who are maybe a five or six years farther down, who are in this middle place. But absorb the story, because the more that we hear the story, the more that we share the story, the more that we understand the needs of. From a societal basis, the more that we will, by default, come together to make things happen for more and more people. I mean, locally, here in New Jersey, there is a residential place that's being built, was planted and built in Red Bank. I don't know if you've heard about it at all, but, like, you know, I want this to be the beginning, or at least one beginning. Not. Not the beginning.
• 30:13
  Speaker A: One beginning.
• 30:13
  Speaker B: Yeah, but we need this to. To become so prevalent in the discussion around profound autism.
• 30:20
  Speaker A: We do. Because, you know, so they. They were starving him. And so a couple times. Well, I didn't know they were starving. Right. He was losing his weight, and they're like, he's not eating. And so I. I would drive up there and go. I would stop at a grocery store and buy all of this food, and I brought it. And then after the first time, when I tried to do it again, they. They told me that they wouldn't keep the food and that I had to bring it all home. And. And I mean, he was just dropping weight and dropping weight. Come to find out, you know, it was. It was a very different story than he just wouldn't eat, obviously. And I found out later that Jim was being abused in that home. Yeah. I don't know. To. To the extent I've. I've been leery about sharing all of this, of course, but. But to your point, I think people need to know that this is the reality. You know, we're talking about an individual who cannot speak and he cannot tell me if somebody hurts him and he is at a greater risk for physical and sexual abuse.
• 31:17
  Speaker B: Yes.
• 31:18
  Speaker A: So, you know, the minute we. We really caught on to what was going on, of course we would check him every time we saw him and everything. But, you know, we. We brought him home. And I do know that. That that facility has been shut down. The caseworker, our caseworker that has. That has been helping us with Jim since. Since he came home, you know, explained that there were some things happening with other individuals there as well, and the facility has been shut down. But these things do happen. And this is always one of my biggest fears. And I know it's such a real fear for so many, many parents of kids like Jim. It's been a fear since he was, you know, a toddler. I would check him, you know, if we had a caregiver in the house. I mean, of course I would, I would check him all the time because I just don't know. And here's another thing that people don't think about that is such a real fear for parents like us, kids that have self injury issues and who are non verbal. Right. You, you put your kids somewhere and now they're all black and blue and beat up and, and what is a real likely response? Oh, they did it to themselves, of course.
• 32:24
  Speaker B: Of course.
• 32:24
  Speaker A: You know.
• 32:25
  Speaker B: Yeah.
• 32:25
  Speaker A: So it's just I try not to live in fear. I used to be a very fearful person. I, I try not to live there. Yeah, too much. But, but there's a lot of heartache and there is a lot, there's a lot of fear and I'm afraid to die. I mean I'm afraid to die. That's the bottom line. I don't know who's going to do all of this and, and if somebody is going to do it eventually, right. Like are they going to be as gentle, are they going to be as caring? Do they know what every little noise means? Because I know I'm in, I'm so in tune with every noise and what it means.
• 32:56
  Speaker B: I was, I was talking to a mom in town who has a son on the spectrum and more on the severe end. And I had shared with her that I had used a care, a former nanny of a friend. Cause I had to leave for a flight and I was giving a talk in the Midwest and it was one actually Jamie, I think it was actually less than an hour. It was like maybe 35 minutes that I needed someone because I had to get to leave at the airport and my typical daughter was going to help. All that to say she looked at me and my son in that 35 minutes. Somehow she didn't lock the back door when the dog was, you know, and he was in the backyard. It was fine. I got latched and everything. He was in the backyard and he was hiding behind the detached garage. All that to say is that the woman that I talked to, she goes, don't ever call a regular babysitter again even for 35 minutes. I live down the road. But when I hear you say about the, the noises or the non verbal communication, I think to myself the one thing that always rises for me is if anyone was Gonna, I could. I don't even know you, but I have. If I had someone for 35 minutes, that was you versus my, versus a vetted nanny. You better believe I'm gonna take Jamie over the. You know, isn't that so interesting that that's. I always think that that's such like a binding thing. Whether or not I could actually help you or you help me, there is something about that hyper vigilance that instills this muscle in mothers like us to go, oh, my. I look this one. I go, ann, you're right. I, I should have. And she's like, that was a no brainer. I'm, I'm attuned to this.
• 34:30
  Speaker A: Yeah.
• 34:31
  Speaker B: So I always hope that the more we talk about that as, as our years pile up as mothers and maybe that fear and that anxiety for down the road at least, at least lowers a bit so that there's more people that are in our own world going, yeah, I'll. I have an eye out for them too. Yeah. It's not easy, but it's a nice reminder sometimes.
• 34:56
  Speaker A: Yeah. Yeah.
• 34:58
  Speaker A: I always say we're connected at the heart.
• 35:01
  Speaker B: Very much so.
• 35:02
  Speaker A: We're just connected at the heart just from having the experience. Right. There's just something that happens when two of us or more of us get together.
• 35:12
  Speaker B: Well, the film of all the things that we filter and build around.
• 35:19
  Speaker B: Modern society as women and, you know, mothers, wives, partners, whatever, employees, advocates, entrepreneurs, all these things that all gets stripped down so quickly. And the film that remains is really just that heart connection of, I understand your reality. I don't know exactly your reality, but I understand it probably quicker and more with, with more accuracy than most. And I really thank you for sharing your story and I will hope that, that your community continues to grow and what you are specifically dealing with and living and breathing and happily advocating for, for Jim permeates through the entire community. Because as someone who's a few years behind, just from my own children's ages, I love absorbing these stories. Not from a sense of, oh, that's hard. From a sense of, I am going to be that one day and I can do it too. And so is every listener and so is every grandparent and mother and caregiver that joins in on this and especially just to speak this out loud so that maybe the system responds to the, to the needs that we actually do have.
• 36:24
  Speaker A: Yeah. I love when other parents, you know, will message me and say, hey, can I, can I talk to you for a little bit about, you know, Kennedy Krieger, Because I can say, they're like, how did you do it? I can't even picture, you know, letting my son go for that long and just being able to share our experience so that they know it is doable. And I can walk you through the steps, and I'll be here for you. You can call me anytime. I know what that feels like. I know what it's like when you're sitting in a hotel room or the Ronald McDonald House, you know, visiting and there in that hospital and when. And when you're leaving. And Jim would hold my hand every time I would go to leave, and he would bring me to the door, and my goodness, you know, it just felt like I would be stabbed in the gut. But I. But I knew. I knew this was his only chance.
• 37:14
  Speaker B: Yeah.
• 37:14
  Speaker A: And I'm so grateful. Yeah.
• 37:17
  Speaker B: I think that there's a. Again, there is a connectivity that I see and have beautifully been able to witness through other mothers and children with similar diagnoses like mine, that there's something about the inner knowing that is unspoken. That. Mom, I know that I need this and that you're doing the best for me. Yeah, right. Because I think that the situations and the choices that we have had to make are ones that. I mean, they weren't in my bingo card. They were not my bingo card.
• 37:50
  Speaker A: No.
• 37:51
  Speaker B: At all. And yet, at the same time, living a life where I got to make those decisions has permeated my life in ways that have allowed other things to happen for me, too. And I'm sure that you feel similar.
• 38:04
  Speaker A: Oh, my goodness. And just the. Just what Jim has. You know, Jim is my greatest teacher. Both my boys teach me so much, for sure. Jim has taught me to appreciate every. Every little win. I mean, we don't even have a little win around here. Every. Everything around here is a huge win because it takes so much work for him to, you know, to learn a new skill. But just the way he stops and pauses and watches the leaves blow on the trees. Or he likes to go for. For golf cart rides, and he likes to feel the breeze, and he gets excited and he flaps, and he just. He finds joy. He's not, you know, asking, mom, can I have this? Mom, can I have this? Mom, can we get that? Hey, you know, did you see that? Mom, can I get one of the.
• 38:49
  Speaker B: You mean that the, like, gifts, the registry for Christmas that my oldest sent me, and I'm like, I'm. I'm getting your sister a pile of Capri Suns. Like, that's what she's getting Santa's bringing a pile of Capri Suns and she's going to think it's the greatest thing ever.
• 39:02
  Speaker A: Yeah.
• 39:02
  Speaker B: You know.
• 39:03
  Speaker A: Yeah.
• 39:03
  Speaker B: So they're not asking, not begging.
• 39:06
  Speaker A: No. He's. He's taught me to appreciate life and to be. To be so grateful for what I have. And I don't mean just, you know, material things, just the ability to move my body, to go for a run, to do an exercise class. These are things that Jim is not able to do, and I am able to do them. It's just he truly is. Is my greatest teacher. And I didn't know that he was going to be. Yeah, I thought I was going to be the one teaching him all the time. And he's the one teaching me so well.
• 39:40
  Speaker B: I love that. And I think that that will resonate so deeply with so many others in similar parallel lifeboats. And as we're all in this together, but all have unique actual realities. The more in which we hear that the hard sits so nestled to the beautiful, without a doubt, I hope that homebound and healing continues to grow and that. I'll be sure to share all of that on the episode summary, as well as where you can get in touch with Jamie directly through any of her pages as well, and community. So, Jamie, thank you so much for being here on Instigence today.
• 40:14
  Speaker A: Thank you so much for having me. It's an honor and a privilege.
• 40:17
  Speaker B: Of course. All right, well, until next time on the Inchdence podcast.