Raising Rain: A Story of Autism, Awareness, and Unbreakable Bonds with Sylnita Livas-Bougere

In this episode of This Ability Podcast, we welcome Sylnita Livas-Bougere, an educator, advocate, and devoted mother from Thibodaux, Louisiana. After relocating to Lafayette following Hurricane Ida, Sylnita has dedicated her life to autism awareness and special needs advocacy, inspired by her 13-year-old son, Rain, who was diagnosed with autism at the age of three. She shares her journey of navigating autism, her passion for educating children about neurodiversity, and her work as an author. Her children's books, My Friend Rain and My Friend Rain and The Hurricane, introduce young readers to the world of autism through relatable storytelling, helping them understand and embrace differences with empathy and kindness. 

Beyond children's literature, Sylnita has also created resources for parents of children with special needs, including Thriving and Surviving 101: The Journal for Special Needs Parents, a guided journal designed to provide emotional support and an outlet for caregivers. In this episode, she discusses the mental and emotional challenges faced by parents, the importance of community, and her upcoming book My Cup is Half Full: Positive Affirmations for the Special Needs Parent, a collection of daily encouragements and reflections aimed at strengthening and uplifting caregivers. Sylnita’s powerful message of resilience, faith, and advocacy is a must-listen for anyone in the special needs community seeking inspiration and connection.

Transcript

Mary Baudoin (00:07):

Thank you everyone for joining us today for this episode of This Ability Podcast. I'm your host, Mary Baudoin, and joining us today is my friend, Sylnita Livas-Bougere. So Nita, thank you so much for joining us today.

Sylnita Livas-Bougere (00:19):

Thank you for having me. It's a pleasure to be here.

Mary Baudoin (00:21):

Definitely. Tell our audience a little bit about yourself.

Sylnita Livas-Bougere (00:24):

Well, my name is Sylnita Livas-Bougere. I'm a proud native of Thibodaux, Louisiana. I relocated to the Lafayette area with my son, Rain, in 2021 as a result of Hurricane Ida. I was educated at Southern University in Baton Rouge and Nicholls State University in Thibodaux. I have an associate's in business, a bachelor's degree in mass communication, specifically print journalism. And I have a master's in educational leadership. Three different realms, but it kind of all balances out to what I'm trying to accomplish. I am the proud mother of a 13-year-old son named Rain. He's named after my only sibling. Rain was diagnosed with autism when he was three years old and since then we've embarked on a journey of autism awareness, advocacy, just wanting to share our story and Rain's story with everyone. And so in 2020 I decided to pen a children's book titled My Friend Rain, which would explain to small children why our friends are different.

(01:28):

I'm a 12 year educator and my students would always notice how I gravitated toward children with autism in the school. And so they gave me the idea. They called me Ms. B. They said, "Ms. B, you know a lot about autism. You should write a book." So I took them at their word. In the My Friend Rain book, Rain is the main character. He's a happy-go-lucky little boy with autism, much like the actual Rain, the narrator. And the, I guess you could say, co-star or other main character is Evan. And one thing about both my friend Rain and the second book, My Friend The Hurricane, each character is an actual person and Evan appears in both books. He is the child of a friend of mine who was actually my support coordinator. She became like family and we lost Evan some years ago. And so as a tribute to them and their family and the amazing spirit of Evan, he's going to always live on in My Friend Rain and My Friend Rain and The Hurricane.

Mary Baudoin (02:25):

And what a beautiful way to remember him.

Sylnita Livas-Bougere (02:28):

Yeah, the family, they're the Matisse family of Thibodaux. They have always been supportive of everything I wanted to do. So yeah, I really wanted to continue to bring them on this journey with Rain and I.

Mary Baudoin (02:39):

And Evan's legacy will live on.

Sylnita Livas-Bougere (02:42):

Forever

Mary Baudoin (02:42):

Other children to know ...

Sylnita Livas-Bougere (02:44):

He had amazing parents and siblings. This is just my way of saying thank you to his family and keeping his memory alive.

Mary Baudoin (02:51):

The age group for your book, would you say there's a particular age group?

Sylnita Livas-Bougere (02:56):

Yeah, for those books it's about four to eight. They're small children because what I've noticed in our small children, this generation is wonderful. I know sometimes they're tough on them because they're a little difficult sometimes, a little different, technology driven. But what I've noticed being in a school setting is that these children really embrace their friends' differences. They just want to know why. They merely want to know why. They don't want the just because or because I said so answer for anything. They just want to know why our friends are different. Why do they do some of those physical things or emotional things that they do? And so My Friend Rain touches on everything from stimming to echolalia, which is repetitive sounds that children make, some nonverbal issues that people with autism may experience, sensory processing issues, but it's in children's wording or children's verbiage. So they can understand or relate and say, "Hey, someone at my school does that or one of my cousins or siblings, they do that."

Mary Baudoin (03:55):

What has been the reception after a child reads the book or a group of children? What do they say? What is their feedback?

Sylnita Livas-Bougere (04:02):

Not just children, adults as well. I've had adults tell me that, "Listen, I've learned a lot from this." A lot of schools have purchased this, school districts. The book was actually released in 2021. There are school districts in Bellingham, Washington that have purchased it. There's a bookstore in Sacramento that still carries it. Barnes and Noble carries it, Amazon carries it. So I've gotten a great reception from not just children, but from adults, too, who saw some differences, but didn't really know why those differences were in place or why the child behavior did whatever they did. So yeah, it's been really received well. Normally, I would have thought by now the reception would have kind of died down or slowed down, but as cases continue to increase and diagnosis increases, the need for education will increase. So yes.

Mary Baudoin (04:51):

Yeah, I think it's going to be one of those things that's almost like a foundation book. It's going to be one of those things that people gravitate towards when there's a new diagnosis. And like you said, that's constant. I belong to different Facebook groups and a few autism groups. I hear that constantly. My child was just diagnosed. What resources are out there? And it's good that there's a children's book out there or several that can touch on that to explain it from a kid's point of view, but also to help the parents, too. Like you said, the book is for everyone. And you also wrote a type of journal, if I'm not mistaken. Thriving and Surviving 101: The Journal for Special Needs Parents. Tell me about that.

Sylnita Livas-Bougere (05:32):

Yes. So along this journey I started to notice that not only did children need to be educated, but there was a need for mental health support at parents with children's exceptionalities or special needs through ... And like you said, when we meet different parents and we engage in different Facebook groups or Instagram groups or anything like that, there's a constant, constant need for someone who wants to talk about it or say, "Listen, I'm going through this or I'm dealing with this." So sometimes we don't always have access to counseling or counseling services or they're just not comfortable to go to that. So journaling is therapeutic. So I went with Thriving and Surviving and it is a daily guided journal. So there are a number of different, I guess you could say, topics or writing prompts.

(06:23):

If you're not comfortable enough to get it out to someone else, you have an outlet. And some of those prompts may be I feel strongest when, or I feel weakest when, or today was a good day because, or today was not such a good day because, when I first got my child's diagnosis I felt like, or I feel guilty when. And some of those topics are hard to verbalize or say.

Mary Baudoin (06:47):

Yeah, I'll just chime in on that because one of the things that sort of resonates with me whenever Lexi, we were going through the diagnosis, the different doctors, the neurologist, the geneticist, all of these different doctors. And the neurologist told me, and of course we got several opinions, but one of them said, "She's probably not going to live to be past five." Well, that was just sort of a dark cloud that kind of lingered. But then she is 27 years of age, so she completely surpassed anyone's expectations as far as in the medical profession. But then sometimes that dark cloud still kind of hovers. Is this going to be the year that something happens to Lexi? And it's not something that I really want to talk about because I don't want to seem like a Debbie Downer, especially to other moms.

(07:37):

And some of their moms, their children don't have the same prognosis. So it's something that I do struggle with sometimes and sometimes depression creeps in and it kind of comes and goes, but it's something that's there. And I feel like what you said just really hits the nail on the head. I could write about it, even if I just write a sentence or two and I'm like, "Okay, I'm done." It would help me to just get it out and not have it so internalized.

Sylnita Livas-Bougere (08:07):

It does help. When I published the journal, and I did bring you a copy, I use it myself. And there are days, even though I know what's in it, when I'm writing their tears. There's emotion because I don't always have the outlet to say, "Hey, this is going on. This is how I'm feeling." So I noticed that when I would do different book festivals. And I've started doing several. There's one in New Iberia, the next one I've scheduled, April 5th. I did the Louisiana Book Festival in Baton Rouge in November and I have the Black Ink Festival in New Orleans in May. When I would do different book festivals, yes, My Friend Rain was extremely popular, but I'm noticing a lot of mothers or family members gravitating toward this journal saying, "Oh, my sister needs this. Oh, my cousin needs this. Oh, my goodness." Because they're recognizing that maybe even themselves, they don't understand how to be there for them because that's not a journey they're on and they don't want to leave them just out there.

(09:03):

They're trying to find help. They just don't know how. It does help for me. And like you said, that's always looming. For me, it's every time I see the child that has eloped and when it doesn't end well. That immediately puts me in a dark place of fearful or anxious because at this point I'm now checking my door locks and because these are things that happen and they happen rather quickly in families affected by autism. When we see the parents that pass away before the children and leave them in this world, that is a huge cloud that weighs over us, especially as parents, because we know no one's going to care for that child like we do. And so those are things that we think about and we might not be able to get that emotion out and the writing will do that. So to further this, and this journal was very successful, I've decided, and it's been a couple of years and I've been debating, and now I'm finally going to release a second journal, but it's not going to be just a journal. It's going to be a book of affirmation.

(10:09):

So on April 30th, which is coming up soon, I am releasing finally My Cup is Half Full: Positive Affirmations for the Special Need Parent. So it's not just a guided journal. Each day there's a Bible verse. Each day there's a little reading or passage that kind of ties in what we're going through. Each day there'll be a quote from someone that kind of ties in what we're going through. And I'm trying to implement as well, I've tried to, what's called Love note, where we get a little moment to write about what our greatest strength because in this one a little differently I want to focus more on building up our parents' mental health. What makes you great? Why are you such a great parent? What makes your child so special? What does your child add to this world? Because it's time to build upon those strengths. I want us to get to a less darkening place as parents and that mental health awareness.

(11:08):

And that's kind of like my platform. No, it is my platform, is where I'm moving with that. So yeah, April 30th I'm going to release. It's called My Cup is Half Full: Positive Affirmations for ... Especially as parents, it's 60 days. Yeah, it's a need.

Mary Baudoin (11:22):

That's correct. I mean, even Lexi's diagnosis is called lissencephaly, which is a very rare neurological disorder. And for years I've been a part of the lissencephaly group on Facebook, but even within lissencephaly the children range in their capabilities. So there's not a typical lissencephaly child. There's different degrees of it. And so it is easy to connect with some of these other moms, but then it's also tragic, too, when someone posts a picture of their son or their daughter that just passed away and they're like, "I'm beside myself." And I can imagine myself being in that, too. So death sometimes just comes to mind and it's something that's scary and it's there. And so it's something that, again, I think writing about it could definitely help. So the second book comes out April 30th. Where can people buy the current books, My Friend Rain and your Thriving and Surviving?

Sylnita Livas-Bougere (12:18):

Okay, so My Friend Rain, My Friend Rain and The Hurricane, and Thriving and Surviving are available on Amazon. I have an Instagram page that people can follow. It's @iamrainsvoice and there are links for all three books in my bio. That Instagram page is kind of just daily life with Rain and I, some days there's quotes. Some days it's like the snow day, the funny things that Rain will do to where he just wouldn't go outside in the snow and he's just looking outside like, "Nope, not my thing."

Mary Baudoin (12:44):

Same.

Sylnita Livas-Bougere (12:45):

Me, too. I was all for it. It's just following along and every day I'm being reassured that what I'm doing as far as these caregivers and their mental health and the strength of what we're doing is necessary. It was funny because last week another mother made a post that I follow on Instagram and it was something about finding our spark. Some days we just don't do the makeup and the hair like we used to because we're tired and whatever. And I commented on it and said that, "Yeah, it's the years of missing our own doctor's appointments and dental appointments and hairdresser appointments and stuff." And at some point we look at ourselves like, "Man, what happened?" And literally as of this morning 1,285 mamas commented on what I said.

Mary Baudoin (13:31):

Well, I think of another one.

Sylnita Livas-Bougere (13:33):

There's a need. Yeah.

Mary Baudoin (13:34):

There is a need. And it touched me because I can completely relate to that. There's that common ground of, yes, I've had to cancel appointments so that I can ring Lexi here or I can postpone this personally to take care. Yeah, that's why right now I'm an undergraduate at UL. I'm a 50-year-old college student, but it's like I've put it off for so long that I'm like, "Okay, let me get back to this." And hopefully I graduate in May. I remember, well, probably last year and year before that I had gained pretty much an excessive amount of weight. And I'm a stress eater, so I would kind of fluctuate. I've been thin, overweight, borderline obese, and then losing weight again. It's very easy to fall into sort of a trend of not taking care of yourself. I've had many days where, yeah, the no hair and no makeup, put my hair up in a ponytail and just go to work.

(14:29):

I don't have the energy to put on the makeup today. I slept two hours, so I'm just going to get dressed and I'm just going to go to work. I think a lot of moms do relate to what you posted.

Sylnita Livas-Bougere (14:40):

And I'm looking, I'm like, "Is this 1,289 or 1,285 or something?" And they're all saying the same thing. I get it. I understand. And every day I'm reminded that those diagnosis are becoming more prevalent. When my son was initially diagnosed in 2014, it was one in right at 60. We are at one in 36 now and it's only been 10 years. I'm sorry. And those are the children that are actually diagnosed. That's not the ones that have slipped through the cracks or the parents that may be in denial or whatever. And funny story I teach here in Lafayette at a local charter school. It was open house. Parents come in, they got a younger sibling with them, they have a child, and he's kind of running around all over the place. And the mom looks tired and she looks defeated and she said, "I'm so sorry. He has autism." I said, "Oh, no, ma'am, you don't ever have to apologize for him being himself in here. He's safe in here."

(15:37):

I don't care if he's peeling the paint off the wall. He's safe in here. And she told me, she said no one's ever told her that. She's never been in a non-judgmental space and literally cried and fell into my arm. There's a need. I love it when people ask me questions, even with my students and I teach sixth graders. So they're preteens, but they're still big babies, but they're similar. But when they become aware of Rain's diagnosis and why he's different, they'll ask, "Can you bring him to school? Does he do things like this?" And some of my students will be like, "My brother has autism, my cousin has autism, my neighbor does." They'll share. Children will naturally share their experiences. They want to know. They're inquisitive, but they're helpful. It's adults I find that are more in the judgmental space. And funny enough, our Facebook post this morning about as a special needs parents, we're in a movie.

(16:30):

Our life is our movie and some of the characters may go because they don't understand our journey. But our children, they're our protagonists. They're our main characters and they are how we get to these great performances. The mental space I'm in is not an easy place. It's been years of, oh, my God, I'm so tired. Why me? How did I get here? But I stopped saying why me and one day I focused on ... And my faith is huge to get me there. I focused on that, man, God thinks enough of me. He values me enough to say, "I'm going to give you this child. I think enough of you as a person as a child of mine that I'm going to give you this child. Only you can take care of this child." That's a huge job, but God thinks I can do it. Well, he knows I can do it because he gave him to me. So at this point, I can do it all at this point and I will do it all. So I'm going to get up early, I'm going to have 15 hour days.

(17:27):

I'm going to look like a mess some days, but I'm going to tough it out because God said I could do this job. Yeah, he gives his toughest battles to the strongest soldiers. He thinks I'm a soldier. He knows I'm a soldier and I don't waver. I'm going to bend, but I'm not going to break. I'm going to cry. I'm going to need to scream. I may have to just go for a long walk and eat a bunch of stuff I'm not supposed to. We're back to that comfort eating, but at the same time, I'm going to stand strong in this task that he gave me. And to add to my goal in this life or my role, should I say ... Let me correct myself. My role in this life is not just to be this child's caregiver. It's to pull another mother up with me. There's another mother out here and she's listening right now. You're not alone and it's going to be okay. You're not alone. You're going to be fine. You're going to make it through this.

(18:21):

Even on your darkest days when the IEP meeting has gone to hell and back, and the doctor did not get it, and your spouse doesn't understand, and your family doesn't show up like they're supposed to, you will be okay. We've all been through those doctor visits that are just ugh. They just weigh on you, or that IEP meeting, or the school district that just doesn't get your kid, or the teacher that just did not need to be in special ed, or whatever. We've been there and the most important thing is to say, "You know what? I'm not going to fall apart." I'm not going to cry because that's my rule, to never let them see you sweat. Go to your car, cry, have your plan and say this in your mind. I'm not going to take this. I am not going to take this. So you continue to fight on and it's interesting that you said network because ... And my mom always tells me that you have a million ideas when it comes to these families.

(19:19):

And I say, "Yeah, but there's a need for us." There needs to be so many different networks. Special needs parents that can't keep jobs, there needs to be help for that or security for that. There needs to be temp agencies for special needs moms. Well, we can't work 40 hours. We can only work 10, 15 hours. There needs to be networking where there are some of us that own businesses. Hire other special needs mamas.

Mary Baudoin (19:44):

And understand that when you are a special needs mom, you're going to have doctor's appointments and you're going to have to take off of work. I remember when I worked at a resort in Marksville where my boss at the time, he had no children and he actually apologized to me a few years after he had children. But whenever he was my boss, he would sort of give me a hard time when I was taking my PTO. And my PTO, which I had pretty much used up almost all of my time, was to the first few years of Lexi's life, was to bring her to different doctor's appointments because it's the orthopedist, it's the gastro doctor, it's this one. Yeah, she has several different comorbidities, so it's like we need to see all these specialists. Which in addition to that, I mean, it doesn't take a mental toll on us as well, but it wasn't like I was taking a cruise to The Bahamas. We were getting doctors and tests and evaluations and those things. And it helps to have an employer that understands that.

Sylnita Livas-Bougere (20:47):

I'll talk about my current employment as now, that things happen. The child can't verbalize what's going on because rain is nonverbal. Sometimes I have to go pick him up from ABA therapy because that's where he goes. He doesn't go to public school. And it's difficult the first couple of days of school because his schedule changed drastically when I took this new position in a different school. But I want to shout out to Lafayette Renaissance Charter Academy. My principal Jay Benoit, my assistant principals. They have stood in the gap for me. They have stood in the gap for me. There have been days where I've had rough days and broken down and my principal's like, "Wait a minute, you're a smart lady. You're going to figure this out." And so it makes all the difference to have someone. And I'm there 90% of the time, but when those days have to happen, my sixth grade team is with me. It has made this year a totally different existence and environment for me. And I've been able to be a phenomenal and even better educator because I'm supported.

Mary Baudoin (21:47):

Yes, you can give 110% because I can tell you're one of the employees that will give it your all. And so you can function better as an employee when you've got a good support team behind you. Definitely.

Sylnita Livas-Bougere (22:01):

Yeah, they've been phenomenal, but that doesn't always happen and I'm understanding. I came over from Lafayette Parish last year. That didn't happen there and it was tough some days and yeah. And so I think that that's a rarity. I'm very fortunate right now. I'm very blessed. So there needs to be other outlets. I've met several mothers that own businesses that have children with exceptionalities and special needs. And I need us to reach back as a community and say, "You know what? Hey, I'm going to hire this mom for 10 hours a week or hire this mom for 20 hours a week. Or if I have extra something on the weekend that I need her to do, I know we become a network." We are stronger together. I keep saying it. We are stronger together. I am in no way trying to segregate us as a community, but we do need to understand that we are a different community and we do need to support each other.

Mary Baudoin (22:52):

Absolutely. Now, one of the things you mentioned, I think you mentioned this before I started to record, was that your mom was a teacher for 30 years in special education.

Sylnita Livas-Bougere (23:03):

And my mom's been in special ed for years. She's always been around people with exceptionalities. She works in group homes, all kinds of stuff, so that's her thing. That's her niche and she told me that as a child I always gravitated toward people with special needs. I would always go to work with her, so she said God was preparing me then.

Mary Baudoin (23:21):

I was going to ask you, did she give you any kind of words of advice? Any kind of words of ...

Sylnita Livas-Bougere (23:26):

She still gives me words of advice. She's listening. I know she is. She gives me warranted and unwarranted words of advice. I'm very blessed to still have my 79-year-old mother with me and she's something. She's feisty, she's very opinionated, but she is an expert. I take her advice when it comes to people with exceptionalities to heart. She'll look at me and she'll look at Rain and even she'll come to visit because she still lives in Thibodaux. And when she'll come to visit, she's always going to tell me, "Hey, try this. Try doing it this way." And I got to admit it, she's never been wrong yet.

Mary Baudoin (24:06):

She has that experience under her belt.

Sylnita Livas-Bougere (24:09):

She does, she does. She's never been wrong yet.

Mary Baudoin (24:13):

It'll be great to captivate what's in her mind and just ...

Sylnita Livas-Bougere (24:13):

You don't have to captivate it. She'll normally say it. She'll normally say it without warranting, without asking. Sometimes you're like, "Hey, do you mind?" She's like, "Yep." So she's very opinionated, but her opinion matters and she's great at what she does. And I call her the special needs whisperer. She just gets it. She just does and that's something that she passed on to me. She's always said that. She said as a child, if I was out and about with the children that she worked with or some of the adults of the group home, I would be volunteering to go work with her. And if they were not being sensitive or whatever, even as a child, I'd flare up. Hey, what are you looking at? So God was preparing me then. He was lining me up then.

Mary Baudoin (25:02):

Well, speaking of God, I know that your faith is important to you. Tell our audience what role faith plays in your life.

Sylnita Livas-Bougere (25:10):

Everything. I could not survive this life without my faith. This life is not for the weak. It is not for the frail, so you have to have a support system to lean on. God is my support system. Man will fail you. Odds are even the best man or the best person will fail you at some point. God has never failed. I trust him. I trust his word. I trust what he does for me and what he does for me daily, all day, every day. And I won't survive this life without it. There's often days when I'll think to myself, "Well, who told you to step out to the forefront?" You'll doubt yourself some days and like, "Who told you to step out here to the forefront and be this person?" And Mark says, I think, it's a house built on a hill can't be hidden. I can't be hidden. I can't. I can't be hidden, so I hope that's right. Yeah, but I don't want to be hidden. I want to share my story. Rain is huge for me because that is my why.

(26:03):

I mean, I knew I wanted to do something with my life, but Rain has always been my why. He is my clutch. He is my reason. He's my focus. And I read somewhere that he who bears how can endure any why. And so he's my why. I can bear any how come. I can bear any issue because I know he's my why. And some days it's ...

Mary Baudoin (26:31):

Tough, yeah.

Sylnita Livas-Bougere (26:32):

And I can't do that without my faith. That, too, I get from my parents. From an early age I was active in my church. I'm still the same member of the same church. The same pastor that baptized me at age eight, he's still there. So nothing changes with me in my faith other than each day it gets stronger, literally.

Mary Baudoin (26:50):

Is there anything that you wanted to talk about that we didn't get a chance to touch on?

Sylnita Livas-Bougere (26:55):

No. Actually, I am very thankful for the opportunity to come here. I know that there's a mom out there that may follow me and see me and be like, "Hey, I wish I had it together like her." Hey, listen, I'm telling you if you're listening, I don't. I don't, I don't. I am strong in my faith. I recently started a publishing business called Late Bloomer Publishing. My first client's book is also going to be released in the spring and it is called Two Country Boys from Malay: the Miracle of the Mongol AT. And that, too, ties into what I'm doing because we can't always go get traditional second job. We have to figure out other streams of income. Everybody has a gift. Tap into your gift. I thank you guys for listening. I hope you follow me on Instagram, @iamrainsvoice. And tap into your inner you. Don't lose you. Find you, keep you. Pray about everything that's going on. Worry about as little as you can. I know that's easier said than done. And Mary, I thank you for having me.

Mary Baudoin (27:54):

Absolutely.

Sylnita Livas-Bougere (27:54):

And I'm looking forward to meeting and talking with more families.

Mary Baudoin (27:58):

Awesome. I'm sure you will get some people reaching out, so thank you so much for being here. All right, everybody, that's going to wrap up this episode of This Ability Podcast. Thank you for listening.