← Living The Next Chapter: Candid Conversations with Authors and Writers for Readers Searching for a New Read
Living The Next Chapter: Candid Conversations with Authors and Writers for Readers Searching for a New Read
E676 - Jennifer Celeste Briggs - Watching Sarah Rise - A Journey of Thriving With Autism
00:49:26
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- [00:02]
A
I want to say that it's hard being a human sometimes. And no matter who you love and who you're trying to support, that can be difficult. And sometimes reading someone else's words about their own struggles helps you feel less alone and maybe even helps you come to new insights. And I have learned that my sharing about everything with great truth and honesty of the ups and the downs and everything in the middle has been really helpful, not just to people who are parenting kids who have extra challenges, but people who are parenting anyone, including parenting adults and people who don't have any kids at all and are just going along being human. Because no matter who you are, you will encounter things that are tough and make you question yourself and your abilities. And maybe you're hard on yourself. And how do you honestly look at that and then regroup and get back and try again another day, Everybody.
- [01:09]
B
Welcome back to Living the Next Chapter, the Author Podcast. You get to meet amazing authors. I get the joy of having this author on today to talk about her book and her story, but also to come back on one of my other shows called dad Space. And I'm really looking forward to having two times with this guest. Like, how lucky am I? Jennifer's here. And you want to check out as an author, if you want to check out a really beautiful website which could inspire you as an author to create a really beautiful website, you got to go to watching Sarah Rise.com and check out Jennifer's website. It is gorgeous.
- [01:46]
A
And.
- [01:46]
B
And if you want to give that little wheel on your mouse a workout, go to the tab that says the book Watching Sarah Rise. And then just looking at the awards and I tell you, your fingers going to get tired scrolling through this page. There's so many awards for waiting. Sarah, watching Sarah rise. And I'm so excited. I've Jennifer here. Have I done enough? Jennifer, about the website.
- [02:07]
A
I love it.
- [02:08]
B
It's beautiful. Thank you so much to see you. It's good. It's really good. I love it. And the book cover is beautiful. There's a lot to talk about. Welcome to the show.
- [02:15]
A
Thank you. And the book cover, that is Sarah. The picture was tweaked to make it, you know, bring in more light at the top. But. But that is a photo that my husband took.
- [02:26]
B
Well, congratulations, your husband for an amazing photo, too. That's beautiful. So I love that. See, now that's the thing you don't get when you look at a book on a shelf. You don't even know how they do that cover. But now we know. Awesome. Great to have you here, Jennifer, Tell everybody. Jennifer, where are you? This big world of ours?
- [02:41]
A
I'm in Pittsburgh, Pennsylvania.
- [02:43]
B
Ooh. I've got friends there. That's a great place to live.
- [02:46]
A
It really is. And it's a gorgeous day today. Just sunshiny and, you know, the leaves are turning color. It is perfect.
- [02:54]
B
Excellent. Beautiful. Let's start. Let's talk a little bit about your journey as an author. As a writer, I'm really curious how people get to your spot. We have a lot of authors who listen to the show. They're, they're, they're wishing and dreaming that they could have a gorgeous website like yours and a beautiful booklet like yours as well. But they're just starting. Like this feels like forever in the future to get to this point. But you're here, you've done it, and I know you've learned a lot. So let's talk to that author that's listening. Jennifer, what. What would have been encouraging for you to hear early in your journey that a fellow author could hear today that would really help them?
- [03:35]
A
That there are tons of people out there available to writers in whatever stage of the writing process they're in to help? I somehow was under the impression that I needed someone to discover me and say they wanted me to write the book. And then I got past that notion and was like, okay, I'm going to write the book. And had many false starts of trying and feeling overwhelmed. And I didn't know that there are people who are book midwives and help people from the get go or developmental editors. I had never heard of just that there are developmental or line editors. I didn't know anything about that. I thought I had to be discovered by a publisher or discovered by an editor who would then want to work with my book even once it became a book. Once I got past my starting a million times and abandoning it a million times because I felt like it was too overwhelming and I couldn't do it. And eventually, I think during the pandemic, I suddenly had more time and was like, oh, I only need to know the first step. The first step is just to look back at all of the weekly updates I've been writing about our experience and just go through and copy and paste the parts that I like and put them in one document and then start working from there. And so that gave me a really simple task to do that was also quite time consuming, but it put everything in one spot instead of me just trying to dump everything out of my brain in one go. And then once I thought, oh, I'm ready for an editor. I was just talking to someone who then said she knew an editor. And then I learned that, oh, you can just pay an editor. You don't have to have the God smile upon you. You can just find someone and hire them and you get to shop around. You can interview them, you can talk to them first. You can do like have them do a quick read sample of their editing. So that's what I did. I paid for just a full read through and giving general feedback. And then my editor also did very thorough feedback and editing on a couple chapters so I could see her work. And then I was like, okay, yeah, this is a good fit. So, and, and there are sites like Reedsy that are available and people can go there and look for whatever kind of editor they want, whatever kind of helper. Like, it's just there, there is so much out there for writers and I had no idea of it before.
- [06:07]
B
Okay, beautiful. Well, those are great tools. What about, I guess you have a connection with an organization. Shewrites. What is shewrites? And kind of. How did that kind of fall into place for you to find them?
- [06:20]
A
Shewrites Press is a hybrid press, which means the author pays the money, but the press, the publisher knows a lot more than most. Most people like me. And I know that that's a very broad umbrella term to say hybrid publisher. And a lot of times people think that that means a vanity press which will just publish whatever comes their way. Then there are hybrid presses like she writes Press, where you have to submit and they will vet your work. And they aren't going to just accept anything. And they either accept it and say you're good to go, or they accept it and say, yeah, but this needs some more work. Or they say you need a lot more work, try again later. Or you need copy editing. But then they have copy editors on staff, they have proofreaders, they do the COVID design and the author maintains a little bit more control than if they went with a traditional publisher. So I knew none of this before, but I happen to have gone to college with another writer. And I had reached out to her because I loved her memoir. Her name is Maya Shawn Dag Lang, and her memoir is what We Carry. And it was one of the most gorgeous books I'd ever read. When I read it, I still think that. And I reached out to her of just like, how do you, what do I do now that I have a draft? And she was the one to say, hey, I have heard Of She Writes Press. I know some people that have used them. And then it turned out that my editor also knew someone who had used she Writes Press. So I got connected to authors who had used them, asked them about their experience. Then I submitted, was accepted, and now here I am with a book.
- [08:05]
B
Wow. When did the book come out?
- [08:08]
A
January of this year.
- [08:09]
B
Wow. Okay, so when did you start writing and journaling and making all these notes that became the book? How long did it take to kind of go through the whole process?
- [08:19]
A
Well, if we count from when I started writing my weekly updates, which was when I started the program, the home therapy program for Sarah, that was at the end of 2011.
- [08:30]
B
Wow.
- [08:31]
A
2012, really? I got going. It just started with me writing to my parents and best friends to say, hey, here's what we're doing. Here's how Sarah is progressing. I want to share this exciting news. And that email list grew and grew. And eventually one of the volunteers and professionals who helped with the program I ran for Sarah, he kept saying, you should really make this a blog. I think it could help other people. So eventually I did that. And then my readers again continued to grow, and people kept saying, when are you going to write a book? It was in 2020 with the pandemic that I finally actually was like, okay, let's. Let's make this happen for real. And that still took a long time. So I wasn't submitting to she Writes press until early 2024, I think.
- [09:28]
B
Wow.
- [09:28]
A
Or it might have. I feel like. Or maybe it was 2023. I know I had to wait a long time because, you know, they get a lot of people, and so there's a little bit of a queue. But then also, it just takes a lot longer once you think you're ready and you think you're done with a polished draft. Like, oh, well, then there's the proof editing or like the proofreading, polishing everything, getting the layout set, getting the COVID set, getting your blurbs. So many steps from when you think you're done till you're actually done and it's ready to actually come out in the world.
- [10:01]
B
That's amazing. And you're still writing today. Even on top of the book, you're still doing something for your audience to follow along. So we can see that on the website as well, right?
- [10:10]
A
That's right. I have just continued. Every Sunday morning, I sit down and think about, what was the week? How did Sarah struggle or how did she succeed? How did she progress? What was my parenting experience? Or sometimes now I'm writing about my experience with the book and as a writer or saying, hey, I have an event coming up. I also share about parenting. Amy, who is Sarah's younger sister, or maybe if my husband had a. An interesting moment with the girls, just kind of writing about life because, you know, we keep having experiences and trying to figure things out and getting creative or getting frustrated. And I really. With the whole book and the blog, I really wanted to share how imperfect I feel like I have been all along. And I have big feelings and I don't have all the answers. And I still made a really big difference for Sarah with running a program for her. And so I want parents to feel like they don't have to have it all figured out and that they can really be human and still make a difference.
- [11:11]
B
It's one thing to share your story, and it's a personal story for you and your family, this book, but it's another thing when people start recognizing it. Like I mentioned in the intro, there's so many awards listed on your website and people giving you great feedback, great reviews. Like, what does it mean to you as an author to. To not only share a very personal story with the world, but then to have that kind of feedback and those awards and people coming to you saying, this is really great, Jennifer, like, how does that feel for you as an author to get that kind of recognition?
- [11:44]
A
It's. It feels really validating, especially since I didn't do a traditional publisher, although I very purposely wanted to go with a publisher that would vet my work and say, yes, it's good. We want to put our name on this. But that's been sort of an interesting emotional roller coaster and ride because I'll get the first notice of getting the award and be like, yay. Because, you know, at first, I wasn't even going to put my name in. I wasn't going to put my hat in the ring because I was like, I'm not going to get anything, so why should I do it? And I was like, well, if I don't believe in my book, then why should anybody else give it a shot? Like, let me at least submit it. And then I feel really validated and very happy and then be like, well, you know, this doesn't really mean anything. I'm sure there were probably only, like, two people that submitted to the parenting category. Like, like, I immediately take myself down, down, down, and then have to be like, hang on. No, no, no. And work to, like, build myself back up to feeling good about it, confident about it. Validated and just feeling good that this means more eyes have read the story, more people know. Because my whole goal with it was to just reach out to other parents and help people know about the existence of the Sunrise program, which is now called Autism Differently. But just so people know that there are these resources out there that they might not otherwise find.
- [13:09]
B
Okay, so, yeah, we're going to get now into more of the story. I love honoring the authors that are here because I want to encourage them from one author to another, kind of encourage them. So then when they're sitting there looking at that blank screen or blank piece of paper, they're like, how does Jennifer do this? Like, how did she even get to that point? So hearing your words is encouraging and I really appreciate you doing that, Jennifer. For let's get into the story because there's parents here and family members, extended family members like we've talked about, for me, that can really benefit from watching Sarah rise. Can we talk a little bit about the story about Sarah and a little bit about kind of what's so special about this book and kind of who the intended audience is? I think that'd be really important. But introduce us to Sarah from, from this listener side of the microphone. Tell us a little bit about Sarah's story and, and how this book will help us as parents.
- [14:06]
A
Yeah. And I do want to add one final thought to the writers out there is my best advice is to write a bad draft. Don't expect yourself to do it well the first time, because if you don't have a first draft, you can't do a second draft. And the thing that got in my way the most is if I was judging myself and saying it wasn't going to be good and then I couldn't put anything on paper. So. And maybe that's, that's true about parenting too. Of like, just do it. It's okay if it's not the best. Even though I say that and yet how much do I judge myself? So anyway, that takes over to Sarah. Sarah is my firstborn. She is now 18. Um, when she was born, at first everything seemed fine, normal, healthy. She was tiny. She was tiny for being a full term baby. But, you know, okay, that happens sometimes. By the time she was six months old, it was very clear that she was not developing in the same timeframe that her peers were, because I was getting together with other moms, you know, and I'd see these other kids reaching for toys or rolling over, and Sarah was not doing any of that. She had also had some Seizures around six to eight weeks old. So already that was sort of like a, oh, what's going on in the hospital? But then they said they were benign, everything seemed okay. And then she's not developing. So then we started seeing more doctors, more specialists, trying to see what's going on here with her. She also, at around nine months, was diagnosed as failure to thrive, which means a baby is not growing at the rate that the doctors want the baby to grow. So I then I was really in survival mode of trying to get enough calories in her to avoid a feeding tube. In hindsight, I can say maybe a feeding tube would have been a great idea and saved me some stress, but I really, really didn't want it because I think I was going towards accepting that I had a child with special needs kicking and screaming and fighting and denying it and feeling guilty and like, if I just work hard enough, we can get past whatever this is and no one will ever know. And being so shocked when I even just realized, like, oh, my gosh, I am a parent with a kid who has special needs, and I know some people say disability, so whatever people would feel comfortable with, I like special needs. That just feels right to me. But that was a shock and a long road of accepting it. Even as we had all the specialists coming to the house. Occupational therapy, speech therapy, physical therapy. We tried conductive education, which is another way of helping someone with their physical coordination. And that is what helped her put things together to walk shortly before she was three. So everything was just like, really spread out of. In terms of her developmental milestones. And she did start eating better. It stopped being quite so much of a fight. But basically, even when she was 4, it was like, you want ice cream for breakfast? Sure. How about some butter pats for lunch? And oil straight in a syringe? And like, I wasn't going for health, I was going for calories. Um, again, that's something I can question in hindsight, but I was where I was, and, and I had many years prior to this. When I was in college, I had read a book by Barry Neal Kaufman called Sunrise, about the program that he and his wife, Samaria Light Kaufman, who wrote the foreword to my book, ran for their son Ron, who was diagnosed as being severely autistic. And they were told to put him in an institution. And instead they overhauled their life and started working with him in a. A bathroom. So it would be not really distracting, not much going on one on one, joining his repetitive behaviors. So if he was spinning a plate, they would Sit. And they would spin a plate. And not trying to stop his repetitive behaviors, not trying to force him to interact or respond. They just wanted to be there with him and by their presence and their behavior, be telling him, I love you, I accept you exactly as you are. And after three years of that, he transformed so much. He was able to interact easily with them, with others, go to a mainstream school. And I read the book and was so moved by not just his transformation, but by how bears and samaria had really worked on themselves and had come to peace within themselves in a way to say, oh, here's this child who's very different that other people might label as missing something or disabled. And we don't see anything wrong with him and we just want to let him know he's loved. And that was just amazing to me. And I even thought when I read it in college, like, wow, I would like to run a sunrise program. That sounds really amazing. Then when Sarah came along, even though I knew about it, I was not thinking, oh, let me do this, this is the thing. Because I was, I was in survival mode. And at that time we didn't have the autism diagnosis. And I also felt so overwhelmed just with caring for her that I didn't think I could add learning to do something more or I thought, oh, well, I should already know what to do because I read the book. No. So when she was four, things had changed enough. Like, you know, she was eating well enough, she was walking. We had decided to add to our family. So her little sister was born when she was 4 and at that point she still wasn't talking. And we felt like her eye contact was maybe starting to diminish a little bit with us. And that's when I was like, you know, I think we need to do something more. What if I could? Well, at the time they also did intensives and I thought, oh, what if I take her up there for a week and all the specialists work with her and we come back and our life is fixed and everything's fine. But the people there said, actually we recommend you learn to run a program yourself so that you can tell that you can make a difference and that it's not us making the difference. So I said, okay, fine. And I went up to Massachusetts, which is where the training in person was, because that was before Zoom days, you know. And my mom came with me because Sarah's younger sister Amy was still nursing. She was a baby, so I couldn't be apart from her. My sister in law flew across the country from Seattle to join my husband in Pittsburgh and take care of Sarah while I was away. And I learned how to set up a designated playroom for Sarah, which many families who run Sunrise programs do that you don't have to, you can just sort of change your lifestyle. But a lot of families choose to have a room because it helps not just the kid focus, but the parent focus and not be like, oh, let me do the dishes, oh, the mail. Oh, you know. I learned how to notice when Sarah was available to connect with me and when she wasn't. How to work with her on language, how to celebrate her eye contact without forcing it or demanding it, but just if she would look at me to be like, oh, wow, thanks for looking. And that seems so simple and obvious, but I hadn't thought of it before. I learned how to like make games based on her interests and use her interests to go towards our goals of helping her with language and social connection. I learned how to find volunteers and train volunteers. And I came back and we moved to a new house and I set up a room. My sister in law really helped with that transition and move and would hang out with Amy so that I could kind of get a little bit of time each day with Sarah. And then she moved back across the country. I mean she had already been going back and forth but then it was like, oh, it's just me. And that was when it was like, okay, gotta find some volunteers now. And I sent out an email to friends and family near and far. I got a lot of people who were interested in being trained to work with Sarah or playing with Amy so that I could be with Sarah. I had people offer to bring meals, then I wasn't having to worry about dinner. And things just took off from there over the course of five years, sort of starting really part time to then increasing to full time, like 30 to 40 hours a week of one on one loving playtime, following Sarah's lead and then easing out as she's sort of integrated into a preschool setting a little bit of time during each week and she just took off in terms of her development like as soon as I got back from my week of training and, and I asked her for language differently. She put more sounds together than she ever had in her life. And I think that was largely because I had shifted how I was and my attitude of believing in her and giving her more time and space. She needs 20 seconds sometimes to answer, to respond at all still. And so now she talks a blue streak. We actually have to work on like, hey, Someone else is talking. Now is the time to be quiet. She can play simple board games. She plays imaginatively. Her imagination is like off the charts. Where I used to wonder, would she ever have any imagination? And now it's hard to keep up. She eats healthily. She's potty trained now. She can ride a bike and go swimming. It's just I never in my wildest dreams imagined we would go from where we were to where we are now.
- [24:02]
B
Let's go back to the setting up the room for Sarah. Maybe there's a parent listening and they haven't really understood this part or they haven't comprehended or even thought about doing this and setting up the room. What are some of the key components to setting up the room? Can you give us, for us who are listening and don't have a visual what that room kind of feels like? What's the tone of the room? What's in the room? I'm really curious, what does this room look like?
- [24:29]
A
Yeah, it's mostly empty.
- [24:33]
B
Okay.
- [24:34]
A
Because you want the grownup or teenager or whoever is the sort of facilitator to be the most interesting thing in the room. Rather than having a lot of stuff on the walls. Toys are kept out of reach so that the person you're working with has to go through you and you'll be really user friendly of like, oh, you want something, I'll get you something. What do you want? And you know, I would really celebrate any of Sarah's attempts to say if she wanted blocks or like a matching game or something. And I tried to have always either a toy that had multiple pieces that were the same or two or more of the same toy, so that if she was doing something really exclusively, meaning not looking at me, not really seeming to not need me to be there, like opening and closing a lid, that I could have my own container and not need to take hers to participate. But I could sit a few feet away from her and open and close my container. And then if she would look at me, then I could play from there. So we had a lot of things in twos. Like I had two silk scarves that had some, some pretty patterns and we had a box full of building blocks. We had paper and markers. So if she wanted something, this was especially a little bit later as her language developed more. But you know, if she said she wanted something and I didn't have it, well, I could draw it or we could draw it together, or if she was missing someone, we could write a letter to that person. So trying to Go off of whatever she wanted. But sometimes needing to be flexible and creative, we almost always had Play doh. Because you can do a lot with playdough. One, it's containers. And two, you could, you know, pretend food, or you could mold whatever shape you wanted. We often had a mirror so that she and I could be sitting. Like, she could sit on my lap, and we could still be looking at each other so there's the chance for eye contact. Okay. Yeah. And a little table and chair for her to, like, maybe have snacks. And then I could be reading to her while she was having snacks. And this room also had a door so I could close it so she couldn't leave if she needed to. There was a bathroom across the hall. Or when she was potty training, we had a little portable potty. But the main thing is, like, you can go in and shut the door. And for myself, I could also be like, okay, I'm in here for two hours now. Not gonna leave.
- [27:06]
B
Was that something that Sarah would go to the room on her own or to be kind of like, it'd be a scheduled time that you'd have time together in the room. Like, how did that work?
- [27:16]
A
That was very scheduled because of having Amy. I imagine it would have been scheduled anyway, but because I was so dependent on either it being a volunteer to come from outside of our lives, come into our house and go up to be with Sarah, or come to be with Amy, and that was the time. Okay, I'm going to go be with Sarah now. So it was very scheduled and also scheduled about the time. Because, you know, it. It actually. It can take so much energy to be really focused on a kid and playing with them and following their lead that I think before I started this, I might be trying to play with her. And, like, after 15 minutes, I'd be like, okay, I'm tired, or my mind is wandering. But when I set it up as, like, okay, I'm just in here, then it was okay if I kind of sometimes lost my focus or felt a little bored, or we spent half an hour opening and closing lids because that's what Sarah wanted to do. Okay, but I'm there. So my presence is the invitation that if she wants to go further, we can. And it almost felt like strengthening a muscle. Like, I started with half an hour a day, then I'd build up to an hour at a time, then an hour and a half, then two hours. And that's how my volunteers also would build up their time. And sometimes I even did three hours, which at the time when I started had seemed impossible, but then I did it, or I would do two, two hour shifts some days.
- [28:38]
B
You talked earlier about being in like a friends group and seeing other children and comparing their development to Sarah's development. And that kind of set off a little warning for you. Like, something's different here. When you see Sarah's development delayed in the sense that she's not at the same level as your friend with a baby about the same age, there's that concern. But is there also a. Is there also a, for yourself as a parent, a delay where you're like, you want to celebrate, like, first words, first this, first that, when everyone else is celebrating at the same kind of time, are you kind of wrestling with your own version of that from a parent's perspective?
- [29:19]
A
I think I felt kind of self conscious or embarrassed, like as if it was my fault, as if I needed to do more. And that said, I also feel like, because everything was hard for Sarah and we didn't know, especially in the early days, we didn't know, will she learn to roll over? Will she sit? Will she walk? Will she talk? Will she use the bathroom? Like, any of that. It meant that anything even remotely in that direction felt like a miracle and something to be really excited about. So we didn't get the typical milestones when other people were getting them, but we got many, many, many milestones that we went like crazy about with excitement of like, oh my gosh. She scooted forward an inch. Like, oh, my gosh.
- [30:07]
B
Yeah, okay. For like, for me, I have two nieces. And growing up when they're twins and when growing up as an uncle, there was times where I didn't understand what was going on with these two girls. Beautiful girls, just so smart and talented. But there was just something that was just like, I don't understand why this is happening or why they're responding in a certain way or not responding in a certain way. And I was always kind of confused because I wanted to be there and be supportive until they. We found out later that autism was part of their, their journey. And whether they were living and living through that, I'm like, oh, I gotta go find out more because they don't live under my roof. They're my nieces. But I want to be a great uncle for them and I want to be patient. I want to understand. And I had to learn. I had so much to learn. So there's probably somebody listening to this, Jennifer, and they're maybe like me and they don't have interaction on a Regular basis with these. With these kids that are, you know, that have autism, and they're like, how do I be a great additional support to parents from a distance or in. Not on a regular basis, but when I see them, I'm there for them. What kind of things can we do as we come into the environment to be supportive to you and to be a great support to these kids? Some things for us. How do we do better?
- [31:36]
A
Well, I think going to the kids and connecting with the kids is the support for the parents. Like, that is just. There's nothing that warms my heart more than seeing other people delight in Sarah and connect with her well and support her. Autism is such a huge spectrum. So I know that the things that I've learned for Sarah might be quite different for others, like the fact that Sarah might still need 20 seconds to respond and you might think she hadn't heard you, but to keep waiting expectantly. So that for some people, that might be useful, and for those especially, who might be quite verbal and maybe really like to talk about one subject or two and not really be necessarily interested in other stuff, the way to basically join that repetitive behavior that is a stim, or I think of it as an ism, that's the Autism Treatment center of America's way of talking about that is to be just as interested, be happy to talk about trains or. Right now, Sarah really likes to call herself a computer mouse. And she wants to sing songs, swapping in computer mouse. Like, the computer mouse on the bus goes click, click, click, you know, and so the way to support her and show her that we love her is to play along with that, not try to take her away from that subject unless it seems really easy to do so. You know, like, she'll be interested sometimes in. If I've come home and said, like, oh, my gosh, I was in such a traffic jam, because she loves traffic jams. But that's actually, again, that's me picking what am I going to tell her based on what I know she's interested in. So I think maybe that's the biggest thing is just figure out what the person's interests are and see if you can be interested in it, too.
- [33:43]
B
Yeah, and you're right. The. The autism spectrum is so vast, it's just humongous. So we're kind of speaking in a little bit of generalities here, because we don't really know exactly who's listening today. But for those people who don't understand autism, can you please clarify a few things? Like what. What Maybe from a parent's point of view can be a little frustrating from when interacting with people who don't understand what autism is about, that maybe you can help clarify for people just some general things that maybe we'd be like, oh, I should be a little more gentle or I should be a little bit more cautious, or I should go learn something, like, I should go educate myself. What are some of the things from a parent's point of view that maybe a person with no autism understanding should understand?
- [34:32]
A
That there often are repetitive behaviors or repetitive interests, whether it's, you know, lining things up or opening and closing a lid or spinning a plate or talking about a computer mouse over and over, or wanting to watch a little part of a show or a whole show. But Sarah often likes to watch a certain part of a show over and over and over for days, days and days and days in a row, or will listen to the same music album for months. So I think there's a repetitiveness. There's often it can seem like an exclusiveness of as if. As if the person doesn't care that other people are around. I think that was my perception of Sarah in the early days, maybe when she was, you know, opening and closing a lid and wasn't looking at me. As I spent more time with her, I realized she did know I was there and she did care that I was there and it did matter. It just. She wasn't giving me the signals to show that. And I know sometimes people think, oh, because sometimes autism can present as being socially awkward, maybe not knowing how to respond in a conversation appropriately to what we expect in the neurotypical sphere of things is to say, oh, maybe they're not as tuned in to other people or other people's emotions. Actually, at least in terms of Sarah, she is highly attuned to other people's emotions. She can tell if I am mad, frustrated, sad, even if I am trying to pretend that I'm not. She can read that. And I almost feel it's like a dog smelling fear. Like she can know if I'm stressed about a certain thing and then that might be when she'll not want to do the thing that I want her to do more. So, yeah, I think it often gets billed as being like a social relational disorder, a different way of perceiving the world or interacting with people and doing things repetitively and exclusively. And I also think maybe we're still exploring and figuring out what that actually means, and maybe we're not always right in our assumptions.
- [37:00]
B
Talk a little Bit you mentioned just the, the amount of time that, you know, working with Sarah and helping her and just like this seems very time intensive from a parent's point of view. How do you, maybe you didn't do a great job of it at the beginning, but how, how do you as a parent incorporate some kind of self care for yourself where you're not totally exhausted because you, when you show up for Sarah, you got to show up for Sarah so you can't be totally just done and then start your day. So for a parent that may be struggling with balancing life and caring for their, their kid, any tips on self care for, for a parent?
- [37:43]
A
Yeah, um, a few different thoughts. One is that bringing in volunteers actually really helped me then. I was much less lonely, much less dependent upon my husband coming home, much less drained. I had a lot more opportunity to focus on one kid or the other instead of juggling both. Or sometimes I had to volunteer with each kid and I could go get groceries on my own. Or I was still working part time also, and that work was self care. I think I was a massage therapist. And so to go to a quiet room and really like center myself and connect with this other person who was a grownup. And then at the end they would thank me, not whine about whatever I said, that that was important and helpful. And even with all of that, I still, still struggled and would judge myself and think I needed to be doing more or that we should be in a different place or just whatever. I could still get burned out. And so I spoke to people who had been trained at the Autism Treatment center of America so they could give me ideas about Sarah. They could also help me look at what was I believing about Sarah or the situation or my parenting that maybe was getting in my own way. Like if she was not getting a puzzle piece into a thing and I was feeling really, really like frustrated or low about it, well, maybe that's because I was believing that meant she would never get it. Instead of saying, oh, that means today she's not getting it or right now she's not. It doesn't mean she won't get it later. I also, I spent, I would say, therapeutic minutes, sometimes like half an hour at a time crying in my kitchen. I, I like to sort of snuggle up against the cabinets and sometimes the girls would snuggle up next to me and offer me tissues and just sort of let all the bad feelings come out. And then I would feel clear after. And my mom suggested I could put post it notes around with Reminders to myself about how I wanted to parent or how I wanted to think about me. And then I also. About midway through my career of leading the Sahari's time, my mom and I started talking every day, every weekday, and we still do that because we realized it was really helpful. She's a very good listener and I felt that unconditional love and support from her, no matter what I wanted to talk about, so I could talk about, you know, something silly I'd seen at a grocery store, or my deepest fears and concerns about parenting or whatever it would be. Or now sometimes Sarah could be having a really hard time. And if I feel like, ooh, I'm not in a good space to listen to this, I think I'm gonna lose it too, and start yelling at her too. I can call my mom, who is happy to just be there on speakerphone. She's not even necessarily talking, but having her there, I then feel like I am not alone. And it helps me not like, totally tank into feeling awful.
- [41:03]
B
So for you listening today and you don't know how to help a family member, you just heard what could really be helpful to a parent in this time. So, you know, you can send a card, that's great. You can send something in the mail or you can just show up and listen. And I think anybody can do that. And I think that's super helpful. So I love that. Jennifer, talk about how watching Sarah rise, your amazingly beautiful covered book, can help somebody. Let's talk to that, to that reader who this book is intended for. And again, looking at the reviews, it's really connecting with people. So talk to the person who's going to buy this book, Jennifer, for the first time, they're going to open it. But before they open the COVID before they read a single word, your love letter to them as a parent, as they're going to read this. What is that? What do you want to say to the reader?
- [41:58]
A
I want to say that it's hard being a human sometimes, and no matter who you love and who you're trying to support, that can be difficult. And sometimes reading someone else's words about their own struggles helps you feel less alone and maybe even helps you come to new insights. And I have learned that my sharing about everything, with great truth and honesty of the ups and the downs and everything in the middle has been really helpful. Not just to people who are parenting kids who have extra challenges, but people who are parenting anyone, including parenting adults and. And people who don't have any kids at all and are Just going along being human. Because no matter who you are, you will encounter things that are tough and make you question yourself and your abilities and maybe you're hard on yourself and how do you honestly look at that and then regroup and get back and, and try again another day.
- [43:03]
B
Excellent. And again, just an update on Sarah. What are you excited about? What are you thrilled to see? Hopefully she's scooting across the floor more than an inch. But what are you excited about? What gives you that big smile on your face when you see Sarah today?
- [43:21]
A
Well, I think in terms of the scooting across the floor an extra inch that actually connects so well to what I'm excited for tomorrow, to take her swimming again. Because we go swimming every week and this has been a journey of years, years to teach her to swim. And she's been successfully safely navigating a pool for a while, but not in a way that is like full swimming, you know. And I've been working with her on her legs recently and just last week it finally seemed to click in and she was getting a powerful straight legged kick and it was like, oh my gosh, this is what I always say. It's not if something will happen, it's when. And sure, we have to work for years compared to what other people maybe do, but look, she's getting it. That's so amazing. And today I'll. When she comes home, she'll be riding with her favorite bus driver whom she absolutely. They have been best buds from the moment he picked her up like two years ago. And she still adores him. So she'll come home, she'll be happy. I'll take her to her piano lesson. She loves her piano teacher who is also just wonderful with her and gives her that time to respond. And then she'll ride with me to take her sister to an art class and she will be in the front picking our music. It's probably Lady Gaga or the B52's Love Shack. Those are her favorites right now. She'll ask me what we're having for dinner and sometimes she likes to help make her lunch for the next day. So it's just Mondays. Mondays are pretty nice. And Tuesdays also with the swimming and I feel like now she's usually in a pretty happy, playful mode. So you know, when she comes home I might say welcome home, computer mouse. And then she'll say something about it and yeah, it'll be a nice time.
- [45:22]
B
There you go. Awesome. Jennifer, I talked about the website. It's gorgeous. The COVID of the Book is gorgeous. All the awards are amazing and the weekly updates and everything you send out. Let's talk about the website again and send people there as we wrap up. Again, it's a beautiful website. Everybody go take a look. This is how you should design a website. Talk about your site again, Jennifer.
- [45:43]
A
It's called watchingsararise.com and I want to give some credit to the website designer, which is Websy Daisy.
- [45:50]
B
Nice. That's a good name.
- [45:53]
A
Another person named Jenny, because, you know, half of the people in my generation are named Jenny or Jennifer. But she just did a wonderful job and I really, I love what she did with it. And so if anyone is interested in buying my book, there are links there to all the different places you can get it. It's available as an e reader or audio. I'm the one who read it. And then also, if people really want to follow us week by week, they can sign up to get my weekly updates in their email.
- [46:22]
B
Excellent. Again, Jennifer, I could talk to you all day. I know you got other things to do, but thank you so much for making time for us. A question as we wrap up my podcast is Living the Next Chapter. My question to you, how are you, Jennifer, living your next chapter?
- [46:40]
A
Trying to do so very intentionally with saying, you know what? The kids are not going to be living at home for that much more time. I am not going to live forever. What do I want to do? I want to make sure that I am making good food for my family, that I'm getting some exercise, that I'm going on walks and enjoying what I see that I'm reading. And I am maybe hopefully working on a new book. But those things are always difficult. So I'm telling myself also, okay, just write a bad draft. Write a bad draft. Don't worry about it.
- [47:15]
B
Great. It's a selfish reason to ask that question because I would love to have more time with you here on the show. So as you work on new projects in the future, keep us in mind here on Living the Next Chapter because I'd love to have you back again.
- [47:26]
A
Thank you so much.
- [47:27]
B
Excellent, everyone. All information, as always, in the show notes. Go check out Jennifer's website. Grab a copy of the book. When, not if, when you buy this book, buy an extra one and send it to someone else as well so they have a copy and leave a beautiful review so that more people will buy this book and support Jennifer and Sarah and the family. And maybe there'll be a clickable mouse and we're showing up in the mail that'd be wonderful as well. That's so great having you on, Jennifer. Thank you so much. And all our best to to Sarah and Amy and your husband, everybody, and looking forward to great things in the future. Keep going.
- [48:01]
A
Thank you so much for having me. This was wonderful.
- [48:07]
B
Hey, thank you so much again for pressing play. As you've heard, great guests on the show, and one thing you didn't hear in this conversation is what? What did you not hear? Think about it for a second. That's right. Not a single solitary commercial for a mattress or a supplement or whatever you call it. No. Why? Because we don't want to break up the conversation with commercials. So the fact that you're still here means that you are a fan of the show, I'm assuming. So if you want to help to keep the podcast going and to make me feel really happy, all I really care about is coffee. Okay. I just got to be honest. I love coffee. I'm drinking one right now. Starting to get cold. I need. I need to warm it up. Helping us with our Buy me a coffee link over@livingthenextchapter.com and also in the show notes, helps kind of keep the lights on around here. Remember, I'm doing this for free. I. I'm paying for everything, so I would love to have a little coffee donation. You know, even five bucks kind of fills up my cup. And I would love to enjoy a coffee from you. So if you're interested, again, thank you for listening, but you can use our Buy me a coffee link and fill up the cup. Thanks for being here.