134- Jennifer Celeste Briggs and Following Your Child's Lead- Redefining Autism Support

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Welcome to Every Brain is Different, the podcast where we celebrate the unique world of neurodiversity. We are your hosts, Samantha Foote, a neurodivergent, Board Certified Music Therapist and mom to three kids of ADHD and autism. And Lauren Ross, an ally to the neurodivergent community with over 10 years of experience supporting children and adults with autism.

This podcast is for parents like you. Navigating the world of neurodiversity with love and compassion. Together we'll create a world where every brain is valued and celebrated. We're excited to embark on this enlightening journey with you.

Transcript:

Samantha Foote: [00:00:00] Welcome to the Every Brain Is Different podcast. It is Samantha and Lauren here with you and Jennifer Celeste Briggs. And Jennifer is the mother of a child on the autism spectrum. When her daughter Sarah, was four and still nonverbal, Jenny learned how to run a Sunrise program to help Sarah with language and social connection. Jenny called her program Sarah [00:01:00] Rise, and it was a life changing for everyone involved. She wrote a book called Watching Sarah Rise to share the details of their journey.

Welcome to the show. We're so excited to have you.

Jennifer Celeste Briggs: Thank you for having me. I'm excited to be here.

Samantha Foote: Yeah. Can you tell us a little bit more about how you're involved in the neurodivergent community?

Jennifer Celeste Briggs: I think mainly it's by being Sarah's mom. I'm really not involved beyond that. Aside from doing podcasts now or getting my book out into the world, and sometimes I have had people approach me saying, “because you have experience with autism, maybe you would be able to help you know, X, Y, Z, other person.” I'm like, “no, no, no. You misunderstand. I have experience with Sarah. I am really good with Sarah and I'm still learning how to parent and help her.”

Samantha Foote: Yeah! I love that you bring that up because so many people are like, if I see one person with autism. That's how everyone with autism is. And so you bring up a good point that you know your daughter, your daughter [00:02:00] happens to have autism. You don't know how to- not handle, but you know, like work with everyone with autism because you have your daughter and that's who you've worked with. And so thank you so much for bringing that up because I think that's a good point that if you met one person with autism, you've met one person with autism.

So can you tell us a little bit more about the Sunrise program and what that was?

Jennifer Celeste Briggs: Yeah, it is a program that parents learn to run for their kid or kids, so it's really something that they tailor- Each parent will tailor it. You go and you learn either in person or now thanks to the pandemic, you can learn online. When I learned, the only choice was in person, there was no such thing as like a Zoom meeting or a Google meet or anything like that. And it's really about meeting your child where they are, whether that is just in the way you interact in your day to day. That would be called like a lifestyle program or if you want to set up a specific [00:03:00] dedicated playroom, which is what I did. And then people do either part-time or full-time. So aiming for anywhere from 25 to 70 hours a week of one-on-one time with their child. Usually having volunteers to help. I never hit that 70 hour mark, but people I trained with did.

For Sarah, she got anywhere from half an hour to eight hours a day. I think, once we were fully up and running of one-on-one time, and that was either me or my husband or we had a fleet of volunteers that I found and trained and people would usually do two hour sessions with her. Sometimes I did three hour sessions and then I kind of impressed my own self of like, wow, I just stayed focused and present and playful and following her lead for three hours. Wow. Even with just a few minutes, when I first got back from my training, it changed the way I thought about how to interact. So it's really about following your child's lead and not [00:04:00] stopping repetitive behaviors, but seeing those as the doorway to connection.

So, I changed from maybe just watching her go up and downstairs, that she really liked to go up and down the stairs that led into our house. And instead of watching and making sure she was safe, I started going up and down the stairs too. And then she started just paying attention. It was like suddenly we were together in it instead of me actually putting up the wall of, I'm watching while she's doing.

And I also started asking her for language differently. The Sunrise program is really geared towards social connection and helping with language, and helping with comfort with eye contact, mainly for kids with autism. Could be with adults also, but it's also been used to help people with a range of challenges. So I didn't even have the autism diagnosis for Sarah when I decided to train, but as soon as I got back and asked her for language differently and waited for that language differently, she started [00:05:00] putting more sounds together than she ever had before, and that was just like before I even had an official program set up.

Samantha Foote: Yeah. I love this because if you meet kids where they're at, then you're entering their world. And I feel like the old way of doing therapy, for example, when I went to school, it was, you make them give you eye contact, you make them like enter your world in your way. And kids were very resistant to that, obviously. I, it was about half, not halfway, it was at the very beginning of my internship that it started to change and I was taught to do therapy very differently. But I remember when I first got to my internship, there was this kid who had the goal to make eye contact, and I would sing a song with him. And if he stopped making eye contact with me, I was told to stop singing the song until he looked at me. And now thinking back on that, I'm like, “wow, what was I doing?” But that was like. [00:06:00] 20 years ago, and I'm so glad at how far we've come that you don't demand eye contact, you just enter their world. Just like you were saying, if they're walking up and down the stairs, you walk up and down the stairs. And maybe if I was doing music therapy with that, I might make up a song to go up and down the stairs. And if they joined in the song, then that's great. If they say, sometimes I'll do that in music therapy, and they'll say, “no, stop.” And I respect that and just try to enter their world the way that they want me to be in their world. And so I love that.

So what kinds of things did you do with her? You said that you were asking for language differently. Like how did that look?

Jennifer Celeste Briggs: The backstory to the first big moment, we call it “the milkshake moment”, is that Sarah was diagnosed as failure to thrive when she was very little, like before she was a year old, which means that she was not gaining weight the way people wanted her to gain weight, the doctors. And [00:07:00] that entered us into a phase of me working my butt off to get her to eat enough calories in a day. So, anytime she would ask for food, I was like tripping over myself to get food for her. So, I got back from my training and she asked for a milkshake, and the way she would do that would say she would go, mm, and make the sign for milk. And I knew she meant milkshake. And a milkshake is really high in calories and it's good liquid. And so like I'm, normally, would have jumped up and gone to make the milkshake immediately. And this time I said, “you want a milkshake? Can you try saying the whole word?” And then I just waited and I kept looking at her like, “of course you can do this”, like smiling at her. And I had really shifted in me to believe, oh yes, she can do this. So I waited and waited, and then she said, “mm, k, shh, k.”[00:08:00]

And then I went whooping and smiling and laughing and clapping, and I ran to make the milkshake and it was like, oh my gosh. I just needed to have more faith in her, give her more time and ask. I just needed to ask because the various speech therapies that we had her involved in, they would more be saying like, “oh, can you say bubble?” And then if she did anything approximating that they'd blow a bubble. 'cause she liked bubbles, so that's fair. That makes sense. But they actually weren't necessarily pushing her. They weren't saying, “oh, could you say the whole word bubble?” And then waiting- You have to wait, like even now she's 18. If I ask a question, I have to count to 20 or 30 in my head. Before I decide, oh, she's not gonna answer. And routinely she surprises me and I will think to myself, she is totally not gonna answer. And I'm grumbling and like, why is it so hard? And then she'll answer. I'm like, ah, right. I [00:09:00] just had to give her the time.

Samantha Foote: Yes, giving time is so important. I remember working with kids and when I first started, you just get impatient because you're like, they're not gonna answer. They didn't hear me. They, but they're processing. So they need that time to process the information. And that's what I tell all the therapists that work in my company. I say, “give them time. Do not ask a question, wait five seconds, ask the question, wait five seconds, ask the question” because they're, they need time to process it, and that's okay. Just give them that time. And so I love that you did that for her and had those expectations that yes, you can do this, but if she didn't do it, you weren't gonna punish her or something. You were just, so tell me what you did, if maybe you waited and nothing happened.

Jennifer Celeste Briggs: Then, uh, or I could even give an example of now, like I might ask her if she went for breakfast and she [00:10:00] doesn't answer after 30 seconds, I just ask again, or maybe I, I change how I ask. Like I might say, “how about I get you a muffin for breakfast” so that I've made it simpler that then she can just say yes instead of needing to say the thing. Although she talks a blue streak now. I mean, honestly, the thing we have to work on, the, the goal that we have now is how can we help her learn when it's appropriate to talk and when it's appropriate to listen.

Samantha Foote: Yeah. Yeah. That's awesome. I love that you change the way you ask the question because sometimes the question is, there's too many parts to it. And so if you just say, “what do you want for breakfast?” If I ask my kids that, my son will just be like, “I dunno. There's too many options.” And so I say, “do you want this? Absolutely not. Do you want this? Absolutely not. Do you want this? Yes.”

And so I love that you changed it because sometimes [00:11:00] giving, I know it's important to give options, but if you just give so many options, it overstimulates the brain and so it overwhelms the brain. And so I love that you just change the way you ask the question. That's perfect. And not that you need my validation for what you're doing. I'm just saying I love what you're doing because I've seen it work in my life. I've seen it work with my kids, I've seen it work with my clients. Yeah, I love it.

Did she have other therapies while you were doing this or once you started this, did she not have anything else?

Jennifer Celeste Briggs: It was a gradual ramping up. When I did the training, that was at the end of a summer, and so then we were also in the process of moving to a new house and she was going to preschool. I don't even remember now. Was it every morning? It might have been every morning from nine till noon. She was getting all the early intervention things like OT, PT, speech, and then we [00:12:00] also had found a speech therapist that we really loved who came to our house and he used sign language and she, we had taught her sign language and I just felt like from the beginning he kind of worked with her a little differently, like when she would, she would sign and he would say, I hear you. And I, I loved that sort of validation of that.

And we had also been driving an hour each way to take her for hippotherapy, which is horseback riding therapy. I mean, over the years we tried all sorts of things and probably a lot of them helped. In fact, you could probably say all of them for sure helped. Would I wanna take away anything we did? No. But definitely once I started working with her with the Sunrise program ideas, it was like, oh, oh, this is working more than anything else.

So then when it came time to decide, is she going to full-time kindergarten? We're like, no, [00:13:00] actually. I want that time at home. We're gonna pull her out of school so I can focus and have the volunteer- have more volunteers. I stopped taking her to the Hippotherapy 'cause that was two hours of driving plus the lesson, trying to keep my youngest awake on the drive home and I didn't feel like she was actually getting anything. Like their goal was to help her with language and I was like, I can do way more to help her with language if I'm with her in the Sarah Rise room for those two hours.

So once Sarah Rise was really up and going, she was not getting any outside therapies, aside from that one speech therapist that we had already been having come to the house and he was open to my feedback and training, which is amazing. For all of the volunteers, I would observe them and I would give them feedback and we would talk after every session. And I think it's amazing that a professional was like, “yes, parent! Please tell me what I should do differently with your child.” And was open to that. That's, I don't [00:14:00] think all professionals would be that way.

Samantha Foote: No, definitely not. I actually worked at a place where the, it was like the regional president, representative, I don't know, she was a regional boss and she said, “We know kids better than their parents. Don't listen to what the parent wants you to work on. Just listen to the evaluations that we do.” And I quit. Like I quit very soon after that because, and I opened my own developmental disability agency because I, that is not true. Parents are around their kids way more than any professional ever will be. They know their kids the best. They know what their kid needs to work on in the home to make their home life better, to make school better, to make all the things like. And so you, I definitely think that professionals should do an evaluation and should do their own assessment, but, and also talk to the kid. Talk to the kid [00:15:00] and say, what do you wanna work on? If the kid is able to communicate what they wanna work on, but when they're little, four years old, I don't think that they're really gonna be able to tell you exactly what they're gonna need to work on. But when I had an older kid, he was seven, he said, “I want a friend. I wanna make a friend.” That's what we worked on. We worked on social skills. But yeah, I definitely love it when professionals collaborate with parents and just say, these are the things that I'm seeing. What are the things that you're seeing? What's working well in your home? This is what's working for, for us in like the sessions that we're doing. How can we make it so the kid is getting the same like interventions, I guess, throughout all their environments? Because you don't want the professional to be doing something different than the parents doing because then the kid's just gonna be confused. And so it was like when I was doing, when I used to do behavioral therapy, I would do things [00:16:00] different than the parent did things and the parent said, “I am not getting the same results as you.” I said, but they were using punishment. And I'm like, “I'm not using punishment. I'm using positive reinforcements.” and I'm not blaming the parent at all. They were just doing what they thought was right. Traditional parenting told you to use punishment, so I'm not blaming them at all. But once they started using like positive reinforcement, then they saw that their kid was acting the same as they were acting around me, and the same thing, like I'll talk to parents. I'll be like, “I'm really having a hard time in this area.” And they'll be like, “oh, this works really well for us in the home.” And then I'll start doing that. And it works well for us in music therapy. And so I, yes, definitely professionals and parents should collaborate and then collaborate with schools. I know that. Sarah wasn't, you weren't going to school at that time. She wasn't going to school at that time. But if your kid is in school, I love it when teachers are. Just ask, “what is working well for you in the home? What's working well,” because I [00:17:00] have a son that he just doesn't like to do things when he's asked. And so his teacher asked me like, “what works well for you in the home when you ask him to do something?” And so she actually took trainings on pathological demand avoidance because my son is diagnosed with that. And anyway, just collaboration everywhere. That is the point of this. So I'm glad that your speech therapist listened to you and did the things that you asked, 'cause that's so important.

And then, so did you homeschool like her all the way through schooling or did she ever go back to public school or private school or whatever?

Jennifer Celeste Briggs: I'd say it was an ever changing dance. I pulled her out, was like, we're not doing kindergarten. But then before that year, that next school year had even finished, I had contacted a different preschool that was nearby where they did just morning sessions and they were open to her coming [00:18:00] any number of days of the week, whatever worked for her, and having me or my sister-in-law, who was my full-time helper. Not for the whole time I did the program, but once I was like, okay, we're really doing this and I need a helper. She moved across the country to be that helper. And this preschool was open to one of us being there as Sarah's helper. And so it was like, okay, this is perfect. She'll go a couple mornings a week, then she'll come home and we'll do the Sarah Rise time. But this is the way to really sort of do baby steps back into more social connection, more connection with her peers in a way that she can take it in and that is not overwhelming. And so we, we started just that spring, a couple mornings a week. And then in the fall, the following year when she technically would've been in first grade, she was still in preschool going three mornings a week with a helper. And then we may have even, it all blurs together actually, that like how many years would she in preschool might have even done another and then. at the time when [00:19:00] I think she technically, age-wise would've been going into second grade, that's when she did kindergarten with a teacher who had been in that same preschool. And it was a kindergarten that was half day and only a handful of students. And if she, if Sarah needed a helper, then she had a helper of me or my sister-in-law. But some days she was able to be there without, so we were like baby steps in. And then by the time I was ready to finish running Sarah Rise. We did five years of it and Sarah had finished kindergarten or I mean, you always have to make a decision like half a year, like almost as soon as they've started a school year, you have to be deciding what you're doing the next year.

So that was always a little tricky, but I found a school where she is now, which is a Catholic school, and it's connected to the St. Anthony school program and it, so it's kind of like a school within a school or a program within a school. So she gets a lot of one-on-one support. And she joins the mainstream. But part of why I picked this program is [00:20:00] in contrast to the public schools around us that also have like high support classrooms. In those, it would be the whole class going together to join the mainstream. And where she is now, it's if the whole class is ready. Sure. But let's see how Sarah's doing today. Does it make sense for Sarah to join? How many classes? And that they really were committed also to letting me know to being in touch. If Sarah's having a hard time, if she's crying, let's talk to the parent and find out if we can figure out why and what's going on. And so she's been there- We had her enter when she was nine, but we asked that she enter as a first grader and they said yes. But then to keep her in the program through, it goes through two years of post-secondary in a college, we had to skip her a couple of grades, so we had her in preschool for forever. She hopped over third grade and then hopped over ninth grade, so she's 18 now and a senior. And that has worked really well.

And even the [00:21:00] teachers collaborate well with each other. Like when she started at her high school as a 10th grader and she was having some meltdowns, that teacher immediately called the teacher she'd had in her years before and was like, “okay, what do we need to do?” And then the other teacher was like, “we had a hammock in the classroom. And that worked well, that really helped Sarah settle sometimes.” So they bought a hammock, like one of those like hammock swings for just one person. And that blew me away that they would be so thoughtful and not blaming her. And anytime still, occasionally, she still has hard days. They'll always say goodbye to her. It's like, “okay, Sarah, tomorrow's a new day. See you tomorrow.” They're just, they're able to give her a fresh start over and over.

Samantha Foote: I love that. All schools should be like that. I'm glad that she's getting the support that she needs because that's so important. Did you like train them in any way in the Sarah Rise approach, or did you just talk to them and they did their thing and they've just been supportive?[00:22:00]

Jennifer Celeste Briggs: Basically the latter. I had hoped after, I was really, I was the leader of the Sarah Rise program, coordinating volunteers, giving feedback, everything. I was like, okay, I'm gonna take this and as she entered school, I'll be really involved. And actually, it felt harder for me to stay in that leadership role because that's not where parents are, are cast. But I always felt that I was in a collaborative role and the only thing I've ever asked for with her IEP, is that they give her 20 seconds to answer. A prompt or a question. And that's the only thing I remind them of because with everything else, I have felt like she's getting the support that she needs. And I, I don't see gaps where I think, oh, I really wish they would do X, Y, Z. I feel like they're doing it.

Samantha Foote: Yeah. That's amazing. I love it. I could talk to you all day about this, but we're gonna move along.

So can you tell us a little bit more about your book, where we can find it, and then if you have any other [00:23:00] recommendations for parents raising neurodivergent kids?

Jennifer Celeste Briggs: Yeah. My book is Watching Sarah Rise, A Journey of Thriving with Autism. It is available anywhere books are sold. If it's your local bookstore, you probably have to ask them to order it for you. You go on Amazon, Barnes and Noble Bookshop, you can get it right away. It's also available as an audiobook or an ebook, and many libraries carry it as well.

Samantha Foote: Is it on Audible?

Jennifer Celeste Briggs: It is on Audible, yes. Or on Spotify, wherever. Wherever you do audiobooks. And then in terms of other supports, the Autism Treatment Center of America is where they teach parents to run the Sunrise program. I also recommend Autism Optimism International. They support parents who want to support their kids in this way of really meeting the child where they are. And some great books: If you look up Kate Wild, she has, uh, autistic [00:24:00] Logistics and several other books that really are giving just, just basic how to? How do you like, think about, here are some ideas. Here, what are your challenges? Why don't you try this in terms of helping with language or helping with potty training? Some of that I also touch on in my book, but as we started with, I did what worked for Sarah and I had some false starts and I write about those, like we tried the traditional potty training techniques. Oh, that backfired like crazy, and I had to figure out a new way. And we did, but I don't know that that would be the way for another kid except to say generally I thought about what Sarah loved, brought that into the bathroom so that the pressure was off needing to go to the bathroom and the focus was on doing something she loved together, we just happened to be in the bathroom.

Samantha Foote: Yeah. Yeah. That's amazing. I love it. I love that you even talked about things that didn't work and showed that yes, sometimes things don't work. 'cause I think that's [00:25:00] important for parents to know too. 'cause so many parents are like, that just worked for them and they must be a better parent than me because they, you know, like it just worked for them and it- Usually there's lots of things that you do before something works, so, yeah. Yeah. And then where can people find you online?

Jennifer Celeste Briggs: My website is watchingsarahrise.com. I'm also on Facebook and Instagram as Jennifer Celeste Briggs Author.

Samantha Foote: Awesome. Awesome, awesome. And then our last question for you is, what do you do for fun?

Jennifer Celeste Briggs: I love to read and I love doing crosswords and like the New York Times spelling bee.

Samantha Foote: Love it. I just got into crosswords. I do the mini and, okay. Last week I did the mini in 44 seconds and I've never been so proud of myself and I, I like ran to my husband. I was like, “look what I did!” And he was like, “That's really awesome.” I'm like, you need to be more excited than you are. [00:26:00] But yeah, I love it. I love it. That's awesome.

Thank you so much for coming on the show today. We really appreciate your time and I loved hearing your story, so thank you.

Jennifer Celeste Briggs: Yeah.

Samantha Foote: She was so amazing. I didn't even know that program existed. I love that they're teaching parents to like, go with what your child is doing, just, enter your child's world the way that they want you to enter it. That's amazing. Yeah. I don't know. What did you think?

Lauren Ross: I, no, I absolutely agree with that. When she mentioned her child going up and down the stairs and she's, I, it was like, there was like a wall. Like she's just like watching. And I, I think that's just a really impactful statement in that I think sometimes parents can sometimes just be observers of their children. Again, even you're taking their kids to therapy and other people are working with them and other people are doing this and they're on the sidelines watching, learning that information. And yes, you like play with your kids and whatever, like I would hope [00:27:00] so as a parent, but I think this particular program goes deeper into that and it's putting you in the driver's seat and it's bringing down these invisible walls that we've inadvertently put up and didn't realize. And so like just getting into your child's level. 'cause they don't really have expectations or demands as a parent of, I'm wanting you to be able to do this, this, and this and this. They're just existing and welcoming you into the world, into their world without. All of this expected stuff, or is like the parent, that wall is up and you need to meet certain things sometimes before maybe that wall comes down. And so I think that this approach is really, really great. And then I love the collaboration. I, I think that's so important of, yes. Take what this. Person has learned and also share what works with you in your home. And, and it's great 'cause I think that [00:28:00] professionals sometimes you have that professional, they went to school and they, they, I know best and I have that knowledge and so it's really great when they're open to the parent maybe does know their child best and they probably have a different type of knowledge. And so it's great when the professionals can embrace that and, and collaborate in such a way that makes it just, better for everyone.

Samantha Foote: Yeah. Collaboration all the way around, even with other professionals. I dream of the day when I'm going to have a facility that's gonna have physical therapists, occupational therapists, speech therapists, music therapists, art therapists, ABA professionals, and they can all just collaborate together-

Lauren Ross: Mm-hmm.

Samantha Foote: …On the same kid. And so yeah, the kid will get the same expectations everywhere they go. And that is my dream. Whenever I can build a center, that's gonna be the thing. But there's bills to pay and my employees wanna be paid. Imagine that. So, [00:29:00] yeah. But I thought she was fantastic. And I love that there's a program that's teaching parents how to interact with their kids. Not that parents like necessarily need that. I think that they just need the validation to do what they already wanna do or just learning new strategies that might work for them. And so, yes, I love this program and I'm gonna look more into it. Perfect. Yeah, it's amazing.

So thank you all for listening this week. If you are working with your kids and you would like some sensory equipment, you can go to Harkla and that's amazing. And so we have a link for you in the show notes. They sell sensory equipment and they also have courses for parents, um, to talk about the sensory system and all of that. And I took a couple of their courses and then I got these cubes that are just like brain breaks [00:30:00] that you do. Physical brain breaks that you can do just different activities, and my clients have been loving them. We just roll the dice. Yeah, we just roll it and then they do whatever's on the cube and some of 'em are more difficult than others. It's like you have to bend down and touch the opposite arm to the opposite leg, and so that, that works on the whole sensory system too, which is amazing. So go to our link in the comment, not in the comments, in the show notes, and you can get that there. So we will see you next week.

Thank you for listening to today's episode. We hope this discussion on neurodiversity has provided you with support, understanding and inspiration. If you're looking for more support, Or you can go to everybrainisdifferent.com and download the ultimate guide to parenting your neurodivergent child.