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How Love Transforms Autism Parenting with Author and Autism Mom, Jenny Briggs · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hey, everyone. Welcome back to my latest episode of the Inch Stones podcast. Today, I have Jenny Briggs here. She is a mother and author. I believe, as stewards of any program, the Sunrise program, Jenny is a leader in the space in terms of creating and forwarding on the mission by living her truth. Jenny has a daughter, Sarah, love her name, who's 18, is also on the spectrum. And Jenny and I shared parallel experience. And one of the things that I always like to do with Inch Stones is to allow those stories, the real lives and realities of mothers and caregivers, to share what worked, what their lives looked like from the beginning, and how they navigated that journey. So, Jenny, thank you so much for being here today.
• 0:42
  Speaker B: Thank you for having me.
• 0:44
  Speaker A: What can you tell us about your journey from the beginning and then where you are now?
• 0:49
  Speaker B: Yeah, well, the beginning, I was so, so eager to be a mom. Like, from the earliest I knew that I could be a mom. So maybe, like, age 4 or 5 or, I don't know, I was like, that's what I want to do. And Sarah was my firstborn, and everything seemed to be going along fine, although she was very tiny. And then at six months, my milk supply took a hiccup, and so she wasn't gaining weight the way the doctors wanted. And also by that point, it was very clear that she was not developing like her peers. And so that just meant lots of therapies, lots of tests, lots of appointments, lots of questions. Me feeling stressed and anxious and feeling guilty like it was my fault and thinking if I just worked hard enough, but also feeling so guilty that I wasn't necessarily working with her when the therapists weren't there because I just felt so overwhelmed. And I spent a lot of time trying to get her to eat enough. And at a year, we found out she had a chromosomal anomaly and that was restricted, responsible for the delays, and that presents with autism a lot of the time. And so in the early years, I feel like on the one hand, I was loving her so much, and I would go for walks and just be lost in how adorable she was. And, like, this is so cute. And then also being stressed and like, is my baby going to live and I have to get enough calories in and I don't want a feeding tube.
• 2:09
  Speaker A: And that I, I, I straddled that so deeply. I know exactly that feeling. And it's hard to sometimes go back to that and, and let that sink in again. That feeling of just, oh, my gosh, give me this sweet little, like, baby that I grow and she's getting bigger and you're, you know, and then met with the reality of the questions that keep hitting you.
• 2:32
  Speaker B: That's right, yes. And so I had read about the Sunrise program when I was in college. I read the book Sunrise by Barry Neal Kaufman. Now parents can go to the Autism Treatment center of America or do training online, which was not an option when I trained. But thanks to Covid, now it is to learn to run a Sunrise program. So I had heard about it. I knew it was a way of helping kids with autism or with other challenges in a really loving, respectful way that followed the child's lead and worked on language and social connection and even sometimes worked with feeding difficulties. And yet in those earliest years, like up until she was 4, I was just try and get through the day and I knew about Sunrise, but I just, I, it didn't occur to me that I could run a Sunrise program or take on anything else. But then by the time she was four, we were less in survival mode. She was walking, she could communicate with signs, she could point to a board and say what food she wanted. So that made things easier. And, and then we had a second child also. We felt like we were enough through the terrifying moments that, that we could do this. But Sarah still wasn't talking at age 4, she could say the sounds for every letter of the Alphabet but she was not putting them together. And we were getting all the therapies, you know, O, T, P, T, speech, water therapy, tried hippotherapy, which is on a horse, conductive ed, anant, Baniel method lessons, which I think that those sort of probably supported her neurological pathways overall. But still language was not coming. And so I was thinking, well, let me try something, it's time to do something big. And I went to the Autism Treatment center of America for a week. I brought Amy, my youngest with me. She was only like a few months old. So my mom came with me for that. My sister in law flew across the country to help my husband take care of Sarah. Because you don't take your child with you for the training. It's just parents for the most part in the training. And I learned how to work, work with Sarah, how to read her signs of like, when is she available for input, when is she not? And once someone explained it, it was so obvious, but I hadn't thought of it before or she needs to be able to watch my mouth if she's going to learn how to say a word. It had not occurred to me but then so obvious once it was pointed.
• 4:56
  Speaker A: Out and don't know what we don't know because we don't know.
• 4:59
  Speaker B: That's right, that's right. And I learned how to set up a room if I wanted a dedicated space to work with her, how to find volunteers, how to train them, how work towards goals and even just how to think about what goals to set for her and how to have my own attitude, be clear and free and not weighed down by all that guilt. I didn't even necessarily consciously know how much my guilt and feeling responsible was weighing me down until those bricks fell away. And then I was like, oh my gosh, okay, I have full permission to love Sarah exactly as she is. Which of course I did. But also maybe I was holding myself back, thinking I needed to get her better, whatever that meant. And that was paired with actual tools to be like, okay, I don't need her to change at all, but I am going to go for the gold. We are going to have the biggest dreams for how far she can go and I'm going to believe everything is possible for her. And I got home from that week of training and I didn't have a room set up right away, I didn't have volunteers right away, I didn't have someone to be with Amy right away. So it was just changing my attitude and lifestyle a little bit. And I asked Sarah for language in a different way at one moment and she put more sounds together than she ever had before. And it was like, oh my gosh, this is just a few minutes and this is doing something. And so then we were moving to a new house. So like it took a while to get up.
• 6:28
  Speaker A: Not the most luxurious thing in the world. I've been pairing luxury in these kind of motherhood conversations because it's so not what people think is luxurious. I hear you say it and I'm like, I just got to experience another mother's piece of luxury. Yes, yes, it's luxury. Yeah, I love it.
• 6:49
  Speaker B: So then we, I did, I did get set up over the course of a few months to have volunteers to be with Amy so I could be with Sarah. I trained volunteers to be with Sarah, eventually ramping up over the next year to have my sister in law as my full time helper. So I mean every day and week was different in terms of how many hours Sarah got of one on one time. It could be anywhere from half an hour to eight hours a day, sometimes of one on one, loving, focused time, working with her, following her lead, but working towards language, comfort with eye contact, just how to interact with other people. But if she didn't want to interact, we were not putting. Pushing it, we weren't forcing it. We didn't stop any repetitive behavior. If she wanted to open and close a lid for half an hour, I would have my own container and open and close a lid for half an hour until she looked at me for a second and that was my opening. But that opening might have been five seconds. And then maybe we were back to opening and closing a lid for 10 minutes and then another opening. But her language just started exploding. She learned to play games interactively the way they're meant to be played. You know, we also played games the way they're meant to be played. And eventually it helped with potty training and she learned to read and write. And it was just extraordinary, the change for everybody, not just Sarah, but for everyone involved.
• 8:13
  Speaker A: The extent with which it reaches the helpers and the support network is something that I'd love to hear more about for you. Because you had said before we pressed record that at one point you had more volunteers and supportive people asking, how, how can I help? And I think when there's a specific ask involved, I'm realizing more and more with my own motherhood with Millie and Mac, that the more specific I am for my needs, the more that people can say, yes, I can do that. And I think it's amazing you'd shared that at some point you actually had to say no to. Cause there were so many people asking to help. Can you go? Can you dive into that experience more? And what that look, what that process looked like about asking for specific help.
• 8:55
  Speaker B: Yeah. So to get things rolling, I sent an email to friends and family, both local and not. Because you never know who knows somebody somewhere.
• 9:04
  Speaker A: Exactly. Yeah.
• 9:06
  Speaker B: Saying, this is the Sunrise program. This is what we're going to do. We called our program Sarah Rise. And I was saying, if you want to help work with Sarah, then I'm asking for two to four hours a week of your time, plus a couple hours once a month for a team meeting. I will train you. If you want to come be with Amy, then any amount of time is helpful. And I will spend the time with Sarah. If you want to make me a dinner, that's awesome. Like, anything is helpful. And I got a lot of responses from that, both from people I knew well and people I didn't know, or people responding, saying, I know someone who maybe has experience with autism and might be interested in babysitting. And I was like, well, I'm going to take that name that person and ask if they'd like to be a volunteer, not a babysitter or. I reached out to the Friendship Circle, which is a group that matches neurotypical teens with kids with special needs, and they just have a playdate like once a week. And I reached out and I said, here's what I'm doing. Do you have anyone who would be open to being trained? This is a little different. And they did. And then that person loved what he was doing so much. He gave a presentation to his high school class about the Sunrise program and about Sarah. And one of his classmates then reached out. I started writing weekly updates to my parents and best friends saying, here's what we're doing. Here's what happened with Sarah this week or what she did. And one of my friends started reading my updates to one of her friends, who then reached out to me and said, hey, I would love to hang out with Amy to give you time with Sarah. So it just felt like it grew. I asked specifically, and then it grew organically. And I asked a friend to send emails to her drama students at Carnegie Mellon University. And one of those people wrote back. And then he was so into it that he told all his friends, like three or four of them reached out to me, one of whom stayed with us for years. And many of them are still part of our life today. They still read my updates that I write. It's just. It was like adding to our family with love and creativity. It was hard to take in that all these people really wanted to be part of the program. But the end of my book is a piece is written by the volunteers saying this is what it meant to me because it really impacted their life. For some of them, it changed what they decided to do after college or just changed how they thought about themselves or moved through the world.
• 11:35
  Speaker A: I'm speechless because there's such power in low conscious growing when loving your child, to have them become the best version of who they are, not to, like you said, not to fix, not to change, not to coerce onto a path that might not be most authentic to their developing body and mind. And when that. When you do it in the way in which you did, which was staying so open to the love coming in it, not only. And I felt this in my world too. It's almost paralyzing to know how much people want to love on your children. You know, it's like it's this fruitful, like explosion of unconditional love for and staying curious to the power of connection and what that looks like and how it manifests and is one person and then, and then three would come and then, you know, there was never really a dead end to it. It just sort of or these fractals of people that is so beautifully authentic to what your needs are. And I believe that that started with your internal knowing about Sarah and knowing that she was so full and fully human and deserving of that kind of love and attention. And I'm sure I, I would love to ask you too, having a typical developing daughter as well. You know, Amy was getting love too. And I love. How did that feel in terms of the whole process as well?
• 13:09
  Speaker B: Yeah, well, sometimes I would feel guilty that we were putting so much focus on Sarah and not on Amy. But in hindsight I can see she got so much more love and attention and one on one attention because of doing the Sarah Rise program that she wouldn't have had otherwise. Because if I was always just me with the two of them, all of my attention would have gone to Sarah. And this way I got time just with Amy when I had volunteers with Sarah or she got the attention of volunteers who were almost like sir get grandparents for a couple of them and or some of my friends who had kids who were Amy's age would come and so then she was getting a playdate. Like it was just amazing. And I think it also probably impacted her to be in a home filled with so much love and celebration and delight. I mean of course we had our hard times and we still have our hard times, but I see the way that she moves through the world and the way she has space for other people to be their unique selves in a way that I don't know if I had that when I was her age. She's 14 now and it's just remarkable. And she is incredible. With Sarah as a sister, I couldn't have designed a better sister. I feel so lucky. And it's also really interesting to have 14 year old be the older of the two developmentally. You know, she can stay at home by herself. Sarah is not yet at that point, but I feel like that transition just kind of worked easily. It just happened. We didn't work hard at it. It was just like, oh well, Amy's now becoming the one who can take a little more responsibility. Or she is helping Sarah with her homework because Sarah will accept the help from Amy sometimes and not the rest of us.
• 14:53
  Speaker A: Of course she does. She doesn't. I think about that. It's very reflective. Again having the, the reverse Morgan being two and a Half years older than Millie. You know, there, there are some very painfully typical things sometimes that happen. Like, you know, Sarah doesn't want you to help. She's fine with accepting her sister's help. But mom, like, that's, and, and how beautifully typical it is. And I, I, I remember when it happened, it was, it was fairly recent. Morgan was in her room, and all the kids had their separate rooms, but, you know, in the same little nook in the second floor. And Millie just barged right in and sat in Morgan's bed. And I hear Millie, get out of my room. Oh, my gosh. I've told mom, like, this whole. And I run upstairs, and I am like, Jenny, I am laughing, crying at this. I don't even know what I'm experiencing. Cause I'm going, how beautifully typical this is. Yes, it is so beautiful. And I look at Millie and goes, seriously, you know exactly what you're doing. You have your own room and a comfy bed, too. And you knew exactly what you were doing.
• 16:05
  Speaker B: That's right.
• 16:05
  Speaker A: And I just loved it so much because having a little boy, too, and obviously with a similar, you know, profound autism and apraxia diagnoses. He's a little boy. He doesn't really care to irk his older sister. He's a more like the baby boy and baby brother and the only boy. You know, I find that fascinating about the typical things that emerge from a very atypical family sibling dynamic. Because when they do emerge, it's another for me to use the term. It's another luxury, because I was never anticipating that to rise up.
• 16:44
  Speaker B: Yeah.
• 16:44
  Speaker A: Like have her so typically choose her sister to help her, not her mom.
• 16:50
  Speaker B: Or they fight. They do fight about things. Or, and there are some things that if Amy does it, then Sarah will get very upset. But if I do it, she won't. And it's like, what is going on here? Sarah's not able to articulate the answer about what's going on for her emotionally. We can just tell she's really upset or impatient or whatever. But it is a mystery about, like, why is it not okay if Amy. Yes, that's something.
• 17:21
  Speaker A: Yes, mystery. That's something that also is a very big word in my world, because there. And I. And I hear you speak to it as well. I think that the mystery of not knowing how you would have expected to know a child with neurodiversity, that you are beautifully given. And I believe they happen for us as, as humans and mothers and parents, the suspension of what if is always the the holding space for the mystery of their development at first. And I, I, I mirror your journey of like the deep, the anxiety and the, the grief and the guilt. And then somehow that space of the unknown and the mystery becomes an uncomfortable place that you learn to sit in because it's actually not wrong. It's just uncomfortable. And I think that we as younger mothers get to experience that with, through our children at a younger phase. I think it's like a wisdom. I think a lot of. I remember asking my grandparents about why they stayed so calm through things that seemed tumultuous. And I think that maybe that's the gift in all of this. Maybe that's what the mystery provides in mothering children who you don't know the exact answer and you still just sit in that. What I like to call like the hot loneliness of don't know what's going on and everything is still okay.
• 18:45
  Speaker B: Yes. Yes. I have been saying something very similar to myself about Sarah's sleep schedule. Just got all kerfluied over the summer and we have no idea why. She, some nights only gets like four hours of sleep. And if I'm thinking about that, then I can be really anxious of like, oh my gosh, she's not getting enough sleep. And then I'm like, wait. But if I step back and just look at her, she seems totally fine. She is happy, she has energy. If I didn't know she didn't get very much sleep, I would never guess it. Maybe I don't need to worry. Maybe it's just what it is.
• 19:22
  Speaker A: Maybe it just is. And I think that anxiety that spurs off of the mystery of the unknown is such wasted energy. You know, it's, it's like, and I, trust me, I'm the, I am like the president of the anxiety club. I am, I will jump to the worst possible conclusion at the first notice of something going wrong. You don't. We would not be good as neighbors because I would basically say, oh my God, something's wrong too. Through the years though, I have learned that that's space. Is it? It doesn't. It, it does nothing to further along your inner peace and for your family. Yeah, sleep, sleep can be very confusing with these children. As I shared with you before fire alarms going off in the middle of the night, my first reaction, if I'm being really honest, was me going, I'm so tired. I am so tired. Like, it wasn't about them actually. It was that my first unconscious reaction to a fire alarm going off in the middle of the Night was actually not about the children's destructive sleep. I'm being very honest. It was that I am so tired. So what does that. What, what. What does that input to me that I need to prioritize, Rest, probably on a greater scale so that when this happens, I don't wake up to the first reaction. Unconscious reaction being I'm so bloody tired.
• 20:51
  Speaker B: I think that's honestly why I'm frustrated about Sarah's sleep, is it's impacting my sleep because she likes to call out for me. And it's like, if it wasn't impacting my sleep, I might be even less worried about it. I might not even know that she was not sleeping well if she wasn't calling out to tell me.
• 21:10
  Speaker A: Again, it. There's a lot of unconscious, subconscious things that we do as mothers. And I think sometimes being so hyper attuned to children with neurodiversity who present and their bodies and minds work in ways that we don't really understand at times, the. The ability to just realize that if someone came in and saw them from the street or a neighbor coming in, they probably wouldn't ruminate and stir over the thing that might have set one or both of us off.
• 21:46
  Speaker B: Yeah, it's been a good thing to have two parents in my household because then we can have the same presenting information. And I am freaking out and so anxious I can't sleep. Worried that it means Sarah's gonna die or something like that. And then my husband's like, everything's fine. This just. This is just a little thing. We just need to, like, let's just give it some time. Or who could we call? Like, he just doesn't freak out, whereas I am the queen of freaking out. And we have had conversations, and I'm saying, you mean you're not terrified that she's going to die if she has another seizure? And he's like, no. I'm like, oh, maybe I don't have to be so terrified.
• 22:31
  Speaker A: Yes, I. I talk a lot about shared orientation because I think that it helps reframe from this one lens in which we as mothers. And again, you and I sit very similarly on. On the s isomer of each other, like, about how we feel and experience our children with developmental disabilities or neurodiversity. And I think sometimes the orientation of mothers similar to us is we get so tunneled into that one perspective of their experience. And so being able to be in a home where the other perspective is not only shared, but also you're able to witness it so consistently it allows for a shared orientation. So it broadens your ability to go okay. Not everyone is seeing this as a what happens if one of the down the dotted line at least the breadcrumbs of different perspective from someone that you love and as another parent is there. And I couldn't agree more with that. It is a regulatory body of cells that helps you quite literally reorient.
• 23:39
  Speaker B: Yes.
• 23:40
  Speaker A: To ask you to share a little bit about your book because that is really what drew us together. And as someone who is a writer as well about this experience, I'd love for you to talk more about Watching Sarah rise.
• 23:52
  Speaker B: Yeah, that is the title of my book. It's called Watching Sarah A Journey of Thriving with Autism. And it is about our whole journey from Intuanthood and those hard years all the way up through deciding to run the Sunrise program for her and how did I make that happen and how I found volunteers and then going through the years of experiences of what did we do in the room, like telling specific stories about interactions with her or maybe challenges that we faced. How did we handle potty training. All of that all the way up through when she's ready to go off to first grade, which happened when she was nine. We definitely played around with the normal timeline of things and then ending with the pieces from the volunteers.
• 24:37
  Speaker A: Well, I'll be sure to put all that information where everyone can follow your work and follow the Sunrise program as well. I think that this is going to pique the interest of so many families that are in similar family situations. And you know, I'm sitting here thinking the Sunrise program actually would work for any family like that. When you really get down to it, doesn't this seem like it's universal that it's coming back to this idea of community and being seen and witnessed and the specific support that is being asked need that, that sense of community support. You know, the third space we talk about like has been lost so much in the digital age and you were able to put that back in to your family in a time that was evolving itself. So I really appreciate you are the way in which you live is such a real example as to what can happen when we ask for the supports that we need. Because that is such a big topic in neurodiversity and what support looks like. Low, high, low support needs, high support needs. It does not really matter what that is. But a support needed is. Is so beautiful if you're willing to suspend your ego and your. Your charge of like no, it should be this way and saying, no, I need this specific help.
• 26:08
  Speaker B: Yeah.
• 26:09
  Speaker A: And you're such a wonderful example of what that can look like.
• 26:12
  Speaker B: Thank you so much.
• 26:14
  Speaker A: What is one small win. Small. Maybe not even a goal that you have, but you realize, wow, that was. I noticed that. And it really was a mark and reminder to me that we are growing. Social construct. Jenny.
• 26:29
  Speaker B: Time's a social construct, but it's where I clash with my family, my husband and my daughters is we'll talk about a plan, and I'll be like, okay, it's gonna be this way. And then it doesn't. And I get upset. And good. Or maybe we don't have to make a plan. But this feels like I'm at the bottom of a mountain. And it's really hard to take on a mountain when part of me still believes that I'm right and they're wrong.
• 26:54
  Speaker A: You will find it so lean on the fact that you have deep in your bones, experience to. To support whatever you need, whatever you need to. To do, whether that's through verbal, you know, affirmations or your own internal work. So thank you for sharing that. And I have to note before I go off, I just realized that your earrings are the Hungry Caterpillar.
• 27:13
  Speaker B: Yes, they are.
• 27:14
  Speaker A: And that is the hyper fixation of my daughter Millie's of the past, like, year and a half. So much so to the point that her social group has those oversized books, like the ones that are, like, literally this big. We've had to hide it from her because she will like luggage. She will try to carry it out. I mean, the obsession, the hyper fixation with Hungry Hungry Caterpillar is alive and real in my home. So it. That was a night. This is a nice little wink from above to see those, because that's Millie going, everyone needs to love.
• 27:49
  Speaker B: Yes, I've got the socks.
• 27:51
  Speaker A: Yes. That's your marketing team.
• 27:53
  Speaker B: Everything.
• 27:54
  Speaker A: We were on that. So that was. That was a nice little smile that I saw whenever you. Because they were. They were. They were straight on, and then they shifted a little bit.
• 28:01
  Speaker B: I was like, oh, my goodness. Yes.
• 28:03
  Speaker A: Anyways, Jenny, thank you so much. Thank you for sharing your Inchtone, and thank you all for listening. Until next time on the Inchtones podcast.