Stephanie Krielow

Our featured guest, Stephanie Krielow, talks to us about her advocacy to get funding for all parishes to have cameras in SPED classes, how people can advocate for change, the founding of Red Oaks Coping and the importance of faith in her life.

Transcript

Mary (00:00):

Thank you for joining us today for this episode of This Ability Podcast. I'm your host, Mary Baudoin, and joining us today is Stephanie [inaudible 00:00:09]. Welcome to the show, Stephanie. Thank you so much for being here.

Stephanie (00:11):

Thank you for having me.

Mary (00:12):

So tell us a little bit about yourself. Where are you from and things like that?

Stephanie (00:15):

Well, originally, I'm from Chalmette, so that makes me Chalmettion, and I moved out here to go to college in the year 2000, graduated college in '04, and started teaching first grade in New Iberia. I majored in elementary education, and in my free time I really love to garden, so I have a family of five. My husband and I have been married 19 years this December. Our oldest is Lucas. He's 17. Our middle is Jonah. He's 14, and our youngest little surprise is a little Miss Elise, and she is nine.

Mary (00:45):

So we're just going to kind of dive right into your family. Is there anyone in your family, any of your children that have special needs or a relative of yours?

Stephanie (00:53):

Yes.

Mary (00:54):

Okay, tell me about them.

Stephanie (00:55):

My middle child, Jonah, is autistic, so he is level two autism spectrum disorder. He has been my number one teacher my entire life. I've had wonderful professors, a really good dad, wonderful family members, but no one can hold a candle to what Jonah has taught me.

Mary (01:11):

That's awesome. What is a typical day like for him? Well, and for you?

Stephanie (01:16):

Well, lots of questions. Yeah, lots of the same questions.

Mary (01:18):

Okay. Repetitive.

Stephanie (01:20):

Oh, very. We like to joke around and say, "We spent a lot of money on speech therapy and we're really excited he can talk, but sometimes it can get a little overwhelming."

Mary (01:30):

I understand.

Stephanie (01:31):

Yes.

Mary (01:31):

Have you thought about using sign language?

Stephanie (01:33):

No.

Mary (01:33):

Okay.

Stephanie (01:34):

I have not.

Mary (01:34):

That's a good option. Just saying.

Stephanie (01:36):

I know some sign language.

Mary (01:37):

Oh, hey. Great. Teach him. Teach him the alphabet. Because it's a wonderful language and it's very quiet, because you can talk, but nobody hears you.

Stephanie (01:46):

Yes, that's great. What I usually do is I turn the question around on him. So every day, he asks me if I remember his iPad from a long time ago, and I say, "Do you remember your iPad from a long time ago?"

(01:56):

And he says, "Yes."

(01:57):

Then, he has answered the question for me, but from what I've researched, I'm part of a Facebook page called Autism Inclusivity, and it's ran by actually autistic adults, and what they share about repetitive questions, it's almost like a scratch that they need to itch, and getting that itch scratched feels good. It's the reassurance, and that's what we've noticed, is the way Jonah connects with other people. So he has certain scripts, certain questions for each person, and it's different for every person. For example, my husband, every time he gets in, "Dad, how was your day dad? Dad, do you remember a certain Star Wars video?" Because that's something him and his dad do together. With me. It's more about the iPad, do I remember the time we went on a certain trip. The questions can become annoying; however, I have to keep in mind that's the way he connects, and so we encourage connection.

Mary (02:42):

Talking about school, do all of your children attend regular school?

Stephanie (02:46):

No.

Mary (02:48):

No? Okay, so tell us a little bit about that.

Stephanie (02:50):

Okay. Well, my oldest, Lucas, attends David Thibodaux STEM Magnet Academy. He's going to be a senior this year, and then Jonah is currently homeschooled. He's planning on joining our cottage school in the fall, which we're very excited about, and then Elise, my nine-year-old, she comes with me to the cottage school.

Mary (03:06):

So tell us more about the cottage school.

Stephanie (03:09):

The cottage school is a very out-the-box idea. I remember, in college, learning about child-led education, and I just could not wrap my brain around what would that look like? How could the children lead the classroom? Of course, the first several years of teaching, I ran my classroom in a compulsive way; your traditional schooling, everyone must sit down, the teachers in the front of the room, and it went well for tickle children; however, with children that have differences, neurological differences, sitting down in a desk all day can be very, very difficult. So the way we run the cottage school, sitting down is not a requirement. I have several kids that are kinesthetic learners. They like to stand up, move around, go in and out the room, and that's okay. We allow for that. We also do not force the kids to do any work, and we do not punish them.

Mary (03:50):

That's right.

Stephanie (03:50):

And it is the most amazing thing when you take the demands off the kids, just do it. The first month or two, we work on establishing rapport, so a lot of the work we give in the first few weeks is below level, because we want to establish that work and relationship back and forth, and the kids feel successful. And so, once they trust you and once they know you're going to be there for them, if they struggle, they're willing to do anything you ask.

Mary (04:15):

I mean, I might be wrong, but once you establish a rapport and a relationship with them, they probably want to exceed your expectations.

Stephanie (04:23):

Absolutely. So every day, when they come in, they have a week's worth of math sitting at their desks, and some days they'll do four pages. Some days they'll do two problems, and that's okay. They're still worthy of love no matter how much work they do, and I'm happy to report more than half of my school did two years in math just this year.

Mary (04:41):

It's incredible.

Stephanie (04:42):

Three days a week, no homework, but just working at their own pace, teaching them what their body may need if they're having some anxiety to do math. I had one little boy, we had to say the M word. It was a trigger for him, and so what helped more than anything was teaching this child, "You're dysregulated. What your body needs is bilateral stimulation." We took him out on the playground on the ladder. He would go up and down a few times, and then he was ready because his body was regulated, and he couldn't believe he mastered long division. We hoped to help these kids understand their bodies so that they know what their body needs when they're older, when they're in a difficult situation. Maybe they got pulled over. We want to teach them, "When you're feeling this way, let's do some coping skills. Take some deep breaths. It's okay to have your feeling."

Mary (05:21):

He said, "If you can identify what might be a trigger for them or what might be off kilter, then you can help them through that problem at the moment, but then also moving forward in the future," and eventually they'll learn to recognize it on their own.

Stephanie (05:35):

Absolutely, and so what we try to tell parents is sometimes, when they start at the cottage school, you'll see some behavior, because it's almost like when you start seeing a counselor, you're unpacking some things, and especially our teenage clientele, when they come in, a lot of them have been holding in these emotions. We allow them to feel it. At first, it doesn't look good, but we're there for them, and we tell them we love them no matter what. Even if you have to take a break, stay in class, of course, is what we hope for but if any time these kids need a break, we tell them they can step out. If they need a teacher, if they need co-regulation, we pull an aid and they can step out, and because the ratio is so small and we have two free-times a day, I can pull the child and help them whatever they missed and get it done.

Mary (06:15):

So the children that attend this school, do they range in their neurological differences?

Stephanie (06:21):

Yes. We do not accept kids according to where they are cognitively or even physically. We have kids that are nonverbal. We have kids that are on a diploma track, so it's kind of a mixed bag. We do our intakes in a clinical way. Before you pay anything, we're going to get a sensory profile so that we know if your child likes to scream, we cannot put your child next to a kid or in the same class with a kid who might have some sensory sensitivities.

Mary (06:43):

Sure.

Stephanie (06:44):

We want to set them up to succeed.

Mary (06:45):

To succeed and the other students, that you're taking all of that into consideration.

Stephanie (06:49):

Before school got compulsive, that's how it was. We were all in a room with teenagers and youngsters, and they naturally help one another.

Mary (06:57):

Let's jump right into a topic that I want to hear more about, special education programs in the public school system. I know that you were very instrumental in helping to get funding or advocacy secured for the cameras in the classroom. Can you tell us more about that, how that came about, and what exactly took place?

Stephanie (07:15):

If you're a parent, always listen to your instincts, because I did not for about three months. Jonah, my son, was in a situation that he was communicating to me was not healthy for him. He would not want to get out of the car, begged not to go to school, and I just thought, "He's just another kid that doesn't want to go to school." My instinct was screaming, but I didn't listen to it, and I regretted every day of my life. So when Jonah, in 2019, he was in a classroom and we got a call to come pick him up, he had had a meltdown, and when I got there, Jonah walked out.

(07:46):

He was guarding his arm, and I called Lafayette Orthopedic Specialist, LOS, and they said, "If you can get here now, come," so we went straight there, and when the nurse was prepping him to take an X-ray of the arm, she noticed lots of bruising up and down his arms, scratching on his back, on his face, on his neck, on his temple. When we asked Jonah what happened, the only thing he said was that he was horrible. That's all he said, "I'm horrible. I'm horrible." So it took everything I had not to go back to the school, let it all hang out.

Mary (08:15):

Sure, yeah.

Stephanie (08:16):

But all I knew was that I just wanted to be there for my son. I wanted it to be over with. That's why I did not call the news station. I didn't want his business out there. I just wanted to make sure he was okay. The next few months were probably the worst in our lives.

Mary (08:30):

But you were able to discover more. I mean, were the faculty and the staff at the school forthcoming with information?

Stephanie (08:37):

Absolutely not. They ended up clearing out the administration and the teacher right after this happened.

Mary (08:42):

Wow. I am very sorry that happened, but I like that you were able to take this very unfortunate situation to help other families.

Stephanie (08:50):

After this happened, I met a lady named Jamie. Jamie Duplechine was her name. She was in charge of LaCan, and she reached out to me, and she said, "I really would love for you to write a testimony on what happened with your son. She told me about the bill at the state capitol that they were trying to get passed, having cameras in every special needs' classroom, and me and Jonah were all for it after what we had just walked through. So I wrote Jonah's testimony down, with the help of Jamie.

(09:16):

Me and Jonah, a few months later, we were at the state capitol, and Jonah got up in front of the Education Committee of Congress and read his testimony with his pictures. That session, the bill did not get passed, but I mean, just the fact that there was a bill was gave us hope. We prayed, and there was a whole group of people that were advocating for this, but the next session, the bill got passed, so now in Louisiana, every single parish has funding for cameras for special needs classrooms. The issue is parents have to request it, and most parents do not know that there is already money there for cameras.

Mary (09:50):

Yeah. I didn't mean to interrupt you. Every parish in the state?

Stephanie (09:52):

Every parish in the state has funding for cameras in a self-contained SPED class.

Mary (09:57):

Okay. So if, let's say, I live in Rapides Parish, and my child attends a school and they are in the special education class at that school, and as of now they don't have cameras in the class, who do I contact? Do I contact the school itself?

Stephanie (10:12):

If I was a parent, I would start at the school level. I would talk to administration at the school. If nothing gets done, from there, then I would go to central office and see about this funding.

Mary (10:22):

So there is funding set aside for every school and there's 64 parishes in Louisiana, so that's amazing.

Stephanie (10:30):

Yeah. I mean, some of the smaller parishes, they're funding $100,000, but Lafayette Parish is a lot of money for cameras, and I think cameras, I have the perspective of a teacher, and I also have the perspective of a special needs parent. So to me, I think this is a wonderful thing, not just for protection for the children, but for protection for the teachers, training purposes. To be able to tell a teacher coming in, who's working with a child that may have difficulty, to say, "Okay. Look at this. This works," to show them a visual of what works for the child. When I speak on stuff like this, I'll always like to speak about not just our side, to think about the teacher. To me, this is a symptom of a bigger issue, and it's not that these teachers went into this profession to try to hurt children. This is a symptom. Our state desperately needs education reform. A person can only put up with so much, so if you have ten kids in the classroom and you're supposed to have two aides and you don't have any, you get pushed to your breaking point.

Mary (11:23):

Definitely. And if you're in an environment that is toxic, it's just full of negative energy, where almost everyone seems unhappy, it spreads.

Stephanie (11:32):

It does.

Mary (11:32):

And unfortunately, it gets into your mindset, and you think that way, but I want to say thank you for getting the cameras done, because like my daughter, Lexi, she's never attended school. She's always been home bound, but she is nonverbal. I have had a situation with an aide before, sort of just going through some neglect in her care. Couldn't put my finger on it first, but eventually found out. Well, we put cameras in our house. I have one in her bedroom and then one in our living room and kitchen, and then I have locks on our bedroom doors now, like a keyless entry, because I've had theft in my house and things like that and even theft with her medicine too.

Stephanie (12:07):

Oh, wow.

Mary (12:09):

Oh, yeah. That was real fun. That's another episode.

Stephanie (12:13):

What can we get done at the capitol for that? Cameras on these kids' wrists or something.

Mary (12:18):

Yeah. That's the part that hurts, is someone taking advantage of my daughter, and then the mama bear comes out. "Don't you ever hurt my daughter," because she's the love of my life. I can't. Yeah, I love her so much, just unconditionally, and the fact that other people don't think the way I do about her, it hurts me.

Stephanie (12:39):

Yes.

Mary (12:40):

So now I'm very, very protective of who is watching her.

Stephanie (12:43):

It's a shame that you have to feel that way, but it is a concern.

Mary (12:47):

It's a reality.

Stephanie (12:48):

It is. Now we're five years out, and now Jonah can tell us what happened, and so he told us they'd kicked him in the back. He hit his head on a bookshelf. He was held down numerous times, so we understand what happened now, and I hate to say it, but he was interviewed by the police, and they walked out and said, "You're never going to get a jury or the DA to even pick up this case, because a jury would not believe a special needs child over a teacher and an aid's word." That's disheartening, because our kids are people always, and they're better in a lot of ways-

Mary (13:20):

Absolutely.

Stephanie (13:20):

... Than the typical population.

Mary (13:22):

I'll be honest, they are more honest.

Stephanie (13:24):

Oh, yes. That's why I like to work with. You gain a weight, you don't have to worry about them telling you behind your back or telling somebody else. They're going to just walk right and say you're getting fat. I find that super refreshing in the world we live in.

Mary (13:36):

But I'm glad that he's able to talk about it. That sounds pretty traumatic.

Stephanie (13:40):

Absolutely. He has not been the same since. We are just getting past the point where, if we're in public and someone says hello unexpectedly, he doesn't raise a fist. This situation caused us to have to put him back on medicine, and he gained 60 pounds, but we didn't have a choice. Well, we did. It was either he lived with us and took the meds or we had to send him to live somewhere else because the violence was so high at the time, and we had a little baby.

Mary (14:05):

For people that are listening, that are curious about how to go about seeing change, let's say there's some parent out there that's seeing something in a classroom or, I don't know, something out in public that they want to see changed, and it needs to be written as a law to be in effect. How do they go about doing that? What would be your advice for someone who wants to take up advocacy?

Stephanie (14:27):

Okay, so LaCan, L-A-C-A-N, is a wonderful advocacy group. Kristie Curtis is now in charge of LaCan, and she is always working. She has community events, community forums to get together and voice these troubles that you may be having. I think the Autism Society hosts a few. Families Helping Families host. Y'all, it costs nothing. You show up, you make your opinion heard or your concern heard, and you have the ability to rally up some of your friends on Facebook or in your family to join LaCan, wear a yellow shirt, and go to the Capitol, and you can speak in front of these in front of Congress.

Mary (15:00):

And I will say too, for anyone who's listening, if there is any bill that you are interested in proposing your state legislature or representative, send that information to us at Disability Podcast so that we can spread that information as well on our Facebook page, YouTube channel, et cetera, and that we can help you get support at the Baton Rouge level so you can be at the capitol. The more bodies you have and the more people who can write to their elected officials to say, "Hey, we support this bill," the stronger the chances are of getting that bill passed.

Stephanie (15:34):

Absolutely. Make a noise.

Mary (15:36):

Yes.

Stephanie (15:36):

You make enough noise, they're going to hear you.

Mary (15:38):

I love that. Let's switch gears a little bit, because I'm loving your shirt, loving the logo you got. Red Oaks Coping. Tell me all about it. How did this concept come about?

Stephanie (15:48):

Okay. Well, it was actually in the deep, dark, horrible place of Jonah being hurt at school. About a year after that, in prayer, I felt like something needed to be done, and that's where it was birthed, actually. It was in the struggle. I yielded my heart to the Lord, and he was able to create this amazing, little school. We started off with little social groups and just me being the teacher. I could not hire anyone, because I couldn't trust anyone because my child had just been hurt, and so, for three years it was just me and a few kids. I started a business in 2020, in COVID year, interesting, but it continued to grow.

(16:23):

Then, two years ago, I filled out a care.com ad for my son. We were looking for a new respite worker for Jonah. A lady appeared at my doorstep. In our one-hour interview where Jonah had wanted to know if she had a garage, wanted to know if she had a Nintendo Switch, wanted to know if she liked raising canes, turned into this three hour heart conversation. I mean, she was an angel on my front doorstep. She had the same heart for these kids as I did, and she's a child life specialist, which a lot of people do not know what that is, but she used to work at Women's Hospital, and she works with children who are sick, children who have experienced grief, children who are walking through their mom or dad being terminally ill, sick, or losing a grandparent.

Mary (17:08):

That was divine intervention.

Stephanie (17:11):

Absolutely. I did not realize how much medical trauma plays a role in people's lives until I met Jen, and when she was still at Women's, because it took her a year for me and her to actually join businesses, but she was still at Women's, and she invited me to go talk to some of the nurses about autism specifically, and the way to talk to people that are autistic, because a lot of people that are autistic take things very literal. You have to be very careful the way you say things. I had a friend, and this was actually the catalyst that got me talking to these nurses. I had a friend with a child that broke his arm, and he went to the ER, and this child can speak, this child has no cognitive delays. The doctor came in and said, "Oh. Your arm's broken. Looks like we got to cut it off."

(17:51):

The triage room in the ER was wrecked. This child ripped the lights out the wall, flipped the bed over. I mean, it was a scene because he took the doctor literally. He thought the doctor was going to cut his arm off. So while I was teaching the nurses, they had a young lady that was working in the ER, and she was clearly distraught. I didn't notice, until a few minutes into my presentation, and I stopped and I asked her if she was okay, and she said she had just done a catheter on a 16-year-old girl who didn't want it in the ER, and she felt like she had abused this girl. That's when it hit me, and medical trauma is real, not just on the person that's sick, but also on the provider.

Mary (18:31):

Definitely. They have feelings too.

Stephanie (18:34):

Absolutely. And Jen had leukemia when she was young. She had a child life specialist who was her breath of fresh air during that time, and so that's why Jen decided to dedicate her life to children that are going through the same thing. She, actually, when she was in graduate school, she worked at a place called the St. David's Center in Minnesota. That's kind of our inspiration for our business.

Mary (18:56):

I want to know the significance, Red Oak.

Stephanie (18:58):

Okay, so red is Jonah's favorite color. We have an oak tree in our backyard, and our initial plan was to build a few classrooms underneath the oak tree. I called my pastor, because we were getting quotes from different contractors, and I asked the pastor, "Do we have a contractor in the church?"

(19:14):

And she said, "Well, why don't you just rent a few classrooms here?"

(19:17):

And I said, "Okay," but we kept Red Oaks, and then Coping, that's Jen. You see in the middle of the O, there's an infinity symbol, which is neuro-diversity. We work with any child. I mean, the way we market the business is anyone who feels different. I grew up feeling different. I marched to the beat of own drum my whole life. Then, the bandaid stands for the [inaudible 00:19:34] agenda.

Mary (19:34):

Love it.

Stephanie (19:35):

So Jen's a play therapist and a counselor. We have our new location. We signed a three-year lease. We're hoping that, after three years, we have enough money in our building fund to pay cash for a piece of land, and we're going to build a community center. So with this community center, we want parents, kids, and siblings to be able to walk in, bring their child, teen, or adult to whatever service they might be going for, whether it's cottage school, social group counseling, and then parents get their cups filled too. So maybe have a few gyms, like they have at hotel rooms, I mean, at hotels, have a room with art going on, have a room with worship. That way, it's a place that you can come and it's where you're loved and accepted.

(20:13):

People understand each other's struggles, and it's just a place to come and get your cup full, to be able to get therapy at the same time as parents, children getting therapy. Where we live in Acadiana, I have shared my heart with so many people. I love to talk, and there's people out there that want to help. I mean, around Christmas, I never go down ambassador during Christmas, but we had a Christmas program, so I had to go get a little cake at Costco. Our little school is a little Christian school, so we had, "Happy birthday, Jesus." I had somebody put, "Happy Birthday, Jesus," and the lady that did it, she a real, bad attitude. I remember standing there while she was writing on the cake.

(20:51):

When she handed it back to me, I told her, I said, "It must be very hard working here right now."

(20:56):

She said, "You would not believe."

(20:58):

I said, "No, I can believe it. I mean, I passed two wrecks on the way here just in the name of Christmas."

(21:03):

And she said, "It's really horrible," she said, the way people talk to her. We were just talking, and she said, "Well, what do you do?" and I told her, and she said, "Well, I would love to come teach cookie and cake decorating to your kids for free."

(21:15):

I said, "Well, we're a business. I can pay you."

(21:17):

She said, "No, some of the best things in life for free," and she wrote her name and her number. She said, "I make $35 bucks an hour here at Costco. I don't need it. Thank you." I still have her little thing, her little card, and that's the kind of stuff. At the community center, there are people in our area that want to help, love to honor veterans, and that's a big, high interest thing with some of my students. So the veterans come. I mean, a lot of these veterans have stories to tell. They have things to teach these kids that, I mean, this is firsthand information.

Mary (21:47):

So I hope the young ones interview or talk to the old ones.

Stephanie (21:49):

Oh, they do.

Mary (21:50):

And hope they record them or something. Yeah.

Stephanie (21:52):

So every year, they-

Mary (21:54):

Or write, tape, or something,

Stephanie (21:55):

Well, we have to go over what not to ask.

Mary (21:58):

Sure, I can understand the PTSD, yes.

Stephanie (22:00):

But once they understand, then they're like, "Okay, cool," and just this year at our Veterans Give Back day, we had a little guy ask, "What is the best? When you came back, what was the thing you were looking forward to the most?"

(22:11):

And he said, "Eating a hot meal."

(22:13):

And my little guy said, "Oh. I had a cold hot dog once. It was really gross," but I love the fact that he was able to understand what he was saying, and he related it to his own life. That's wonderful. That's application.

Mary (22:26):

I think that makes the veterans feel appreciated as well, and then the younger generation gets to understand what they went through for the country, for our freedom. That's a wonderful program right there.

Stephanie (22:38):

Oh, yeah.

Mary (22:38):

I really like that.

Stephanie (22:38):

I feel like everybody asks, "Why do you do what you do?" and I feel like the biggest thing is if I can help some of these kids find their passion, I've done my job, because once most of these kids find their passion, there is no stopping them, so we try to expose them to different causes around town. We've teamed up with Catholic charities and did food drives. We always do a Save the Monarch Butterfly milkweed sale every spring. We didn't do it this year, but we're going to do it every year after this year. Then, we've done some anti-bullying campaigns.

Mary (23:09):

Nice.

Stephanie (23:10):

My teenagers really have a heart and passion to change the world. I mean, they are world changers. I tell them, "Autism is a natural ability to think outside the box." This business, I went into it thinking, "I'm going to help these children." Yeah, right? The first social group, I will never forget, I had a little guy that I was working one-on-one with, and when he would get upset, getting him a peppermint was like flipping the switch, and that goes against every parenting magazine. Better not bring that up in ABA, okay? I mean, from every perspective, you look at that, and it's like you're rewarding the kid for the behavior; however, giving this child, a peppermint completely reset his brain. Why put the child through a meltdown if you can give him a peppermint and he's fine?

(23:50):

So we're sitting around the table, it's the first social group, and this little guy says, "I want to show a YouTube video."

(23:55):

I said, "Okay. As long as it's safe. If it gets unsafe, we have to shut the laptop."

(24:00):

Of course, a few minutes in, it gets unsafe. I shut the laptop, and he stood up and he pushed his chair behind him to where the chair flipped, and I got up. We had four kids sitting around the table. I got up and went and got peppermint, handed him a peppermint, took some deep breaths with him. While I was doing that, a little girl stood up, came around, picked up the chair, and fixed it, and when we sat back down, another child reached across the table, held his hand, and said, "I lose control of my body too sometimes. It's okay."

(24:23):

It was in that moment that I was like, "These kids are amazing. They're going to teach me, and they have."

(24:30):

I mean, unbelievable. The love, the support, and now, if somebody does something wrong, we come together and we talk about it. When you're vulnerable, it gives permission for other kids to be vulnerable.

Mary (24:41):

Yes.

Stephanie (24:42):

I had a situation where they were playing hide and seek, and one little boy accidentally tagged the other little boy with his phone and hurt him. The little boy picked up and threw something at him.

Mary (24:50):

Oh, wow.

Stephanie (24:51):

Well, that little guy went crying, and so I said, "Okay. Everybody, come together. Come on. We got to talk about some stuff," and we sat down in a circle.

(24:58):

The little boy that was crying said, "I don't know why I'm crying, because usually I would've just hit him back."

(25:02):

I said, "Well, you're feeling your primary emotion." They all know anger is a secondary emotion. You don't typically feel anger first. You feel sadness, embarrassment, fear, all those primary emotions.

(25:12):

He said, "Well, I don't know why I'm feeling a primary emotion."

(25:15):

I said, "Well, maybe because you feel like you can here. Nobody's going to judge you for your tears."

(25:18):

Through talking about it, the child that threw something had to leave, because I cannot say that rock is a safe place if it's not, so the boy had to leave. He was apologizing. Well, then another little guy stood up and said, "When my dad died, I was angry for a while, and my counselor helped me understand that it was really sadness," but he was listening to what the other two, what we were talking about, and he felt comfortable enough. At the time, I knew his dad had passed away, but he didn't know I knew, and nobody else in the group knew, so I'm like, this child felt vulnerable enough to stand up and share that, after his dad passed, he was angry.

(25:51):

Truthfully, it was really sadness. Sometimes it takes them to see other people, and it's not to say, "Oh, you were bad." It's to say, "Listen, we all make mistakes. Let's come together now." It's unreal the way they're willing to talk, they're willing to be vulnerable about different things. We had one little guy, he lost one of his close friends to suicide, and his mom called me. He's in our social group. She said, "I really like for y'all to talk about it," and Mary, I didn't want to talk about it. I didn't want to touch that with a 10-foot pole because I know the statistics.

Mary (26:20):

Right.

Stephanie (26:20):

The leading cause of death in high functional, autistic, young adults is suicide, and I'm working with 15 to 20 high function, not all autistic, but most. The Lord gave me the green light, so we brought it up. Some of the things these kids said, it was heartbreaking; however, I truly feel if you shine a light in the darkness, the darkness must, and that's what happened. In the end, a few of them were crying. I was crying.

Mary (26:40):

And that's such a good feeling when you can relate to what somebody's going through too, because then you feel like, "I'm not alone."

Stephanie (26:46):

It's absolutely necessary. What's the hierarchy of emotional needs? Well, it's connection. It's belonging.

Mary (26:51):

Let's talk about, because you have mentioned it throughout your interview here, the importance of faith in your life.

Stephanie (26:57):

I went to private school my whole life. I feel like, in my younger years, faith was more of a surface thing. It was something that you pulled out when you needed it, you put it up when you didn't need it anymore. After me and my husband got married, we started looking for a church, and we started attending our church, not even two minutes away from our house. When we had our oldest, we weren't regular churchgoers, but I would say I was starting to develop a relationship with the Lord.

(27:19):

We had Jonah, and we still kept going to that church, but once Jonah turned two, they had to move him up to the toddler room. They let him stay in the nursery a whole extra year, and it was too much for him. We could not keep him in the room, and we could not bring him into the sanctuary, because he would run around, and so we went home and I was angry at the Lord. I said, "You gave me a child that I do not have a clue what to do with, and now I don't even have the ability to go to church." Even though I still did, that's how I-

Mary (27:46):

Your brain processed it. Yeah.

Stephanie (27:47):

Sometimes I think back to that, and I'm like, "Man, those first few years were the hardest." I lacked faith, and so I'm not ashamed to say, a few years later, I had a newborn girl. That was not planned. Jonah was homeschooled. He was five or six, and Lucas was in school, and my husband was working all day on a Sunday, and I told myself, "I'm going to go to church, because I only have to deal with Jonah, one instead of three." I literally used church as a babysitter that day. I walked into the sanctuary, and I dared the Lord to move me, and he did.

(28:16):

I really think, I know, I say I think, but I know the Lord is using me in this business, because everyone who knows me, I'm a wildflower, okay? I'm not organized. The Lord is using me to glorify him, because I'm still standing after four years. There has been things in this business that have been thrown at us, especially in the last year, that the enemy is making it very clear he does not want this business to succeed, but God, without the Lord, I don't know if I would be here. Without the Lord, I definitely know I'd be in jail, because someone hurt my kid, and I'm telling y'all right now, if it wasn't for Jesus, I would have ended up in jail that day.

Mary (28:54):

Right. I think a lot of moms, parents, caregivers that really do love their special needs' child, if something traumatic happens, like in your situation, yeah, you want to lose it.

Stephanie (29:02):

A lot of parents.

Mary (29:03):

Yeah.

Stephanie (29:05):

A lot of moms say, "Oh. I would've been in jail."

(29:07):

And it's like, "Yeah, but if you think one second further, who would be there for your child?"

(29:10):

With what happened to Jonah, I remember rocking my daughter, literally being in the rocker with her and praying, and telling the Lord, "I promise, for the rest of my life, I will help other kids that are different and parents understand they're different." For the first few years, we didn't understand. We knew Jonah was autistic, but we didn't know what to do with that. My teacher brain was saying, "I don't care what kind of diagnosis you have. You're going to be living in a world where no one's going to care. Better learn how to act," the worse stance we could have taken. Like I said, the Lord uses difficulties, almost as a steering wheel, to direct us where to go, because at the time, I was on the board of directors at the Autism Society, and no one was doing education.

(29:50):

I brought that up at the board meeting, and I don't remember who the president was at the time, but they said, "Well, why don't you do it?"

(29:55):

I'm like, "Ooh."

Mary (29:56):

You just volunteered yourself.

Stephanie (29:58):

Well, and it's funny. I almost quit college because of Communications 200. I could not get up in front of 15 people, but the way I thought was, if I could read about autism and become an expert, and it just so happened the Autism Society had a resource library at my fingertips, I read every book, and it was during a time where I was a stay at home mom, I was homeschooling a six-year-old that was out of control, newborn, one at school. I needed an outlet, and so reading those books, doing the workshops, and learning all there was to know about autism, it was empowering and it helped me guide Jonah. Little did I know, a few years later, I'd have a traumatized Jonah, that it would even help even more.

(30:35):

So one example, I was reading a book about validating emotions, and at the time, Jonah was about five, and when that iPad died, it got thrown and it was an automatic meltdown. I'm on the floor in my living room, on the rug, and I had just shut this book, and I'm telling you the whole book was about validating emotions, and not two minutes later, his iPad died. He threw it across the room, and he started rocking in my husband's recliner, boom, hitting the wall. Boom, boom. And what I would've done before I read the book was go up to him and say, "Oh. Stop rocking. You're going to put a hole in the wall. We don't rock," but I had just finished his book, and so from across the room, I said, "Jonah, it's okay to be sad." Mary, guess what he did? Just guess.

Mary (31:11):

He stopped rocking.

Stephanie (31:12):

And what do you do when you're sad?

Mary (31:13):

You cry.

Stephanie (31:13):

He started crying, and I was able to go over there and say, "I get sad too sometimes. It's okay." He stopped.

Mary (31:20):

What a difference a book makes. Wow.

Stephanie (31:23):

What is a difference not reacting makes, just loving a child despite what it may look like in the moment. I mean, my Oprah, ah-ha moment, again-

Mary (31:33):

That was it, yeah.

Stephanie (31:34):

No, that wasn't it.

Mary (31:34):

That wasn't.

Stephanie (31:35):

I'm going to tell you another story, and it's funny, because most people, they'll be like, "Oh, great. She's telling that story again," but this is my aha moment. I was pregnant, didn't want to be pregnant. I had a kid, completely out of control, and another one that didn't know what was going on. I was in my bathroom, getting ready. I was about 16 weeks pregnant. My husband was in treatment for alcohol at the time. Life was hard. I was getting ready. Jonah came in screaming, and at the time, he had words, but his functional language, he had none. He was screaming and hollering. He picked up my makeup bag, and this was before I read the Validating Emotions book. So he picked up my makeup bag, chunked it against the wall. Half the stuff broke, and that would've been an example of doing what I did, what I was taught in elementary education; get on their level, state your expectations. I'd get slapped across the face if I do that.

(32:17):

So I remember thinking and probably praying, "Lord, as much as I don't want this pregnancy, I don't want to lose it. I cannot keep going toe to toe with Jonah. He's going to kick me. Something's going to happen," so I pulled him on my lap, and I said, "What do you need?" I mean, I might've yelled. I might've.

(32:31):

I thank God every day that, in that moment, Jonah threw his head back and he screamed, "I want to feel better," and it hit me like a ton of bricks. When he's losing control of himself, we are making it worse, and from that point on, we quit reacting to him and started loving him through the kicking and screaming to get to the bathroom, through the refusing to go to bed, and it took about six months. It took a lot of bilateral simulation, kicks, screaming, lots of meltdowns, but after about six months, Jonah learned that he can trust us. We were not going to hurt him, yell at him, pop his butt, whatever. We're not going to try to put him in timeout. That's a joke, by the way. Anyway.

Mary (33:08):

Did you know, I was so glad you mentioned this, Stephanie, because there are probably some parents listening that are going through that Jonah phase that you were talking about, and they probably feel like they're losing hope.

Stephanie (33:20):

If nothing is working, stop. If hitting is not working, if time out is not working, if yelling at the child isn't working, you have nothing to lose. Nothing, except for your pride, which pride isn't good anyway, the flip side of that self-hatred. So follow your pride and hug your child, because connection can do amazing things, and to tell your child, "I'm here with you. I'm not going to hurt you. There is nothing you can do that would make me love you less." Can you imagine being told that when you're acting unlovable?

(33:47):

For some reason, we think that our kids are just so different, and it's like they are not worthy of compassion, but if anything, they're even more worthy of compassion than typical people. People will say, "There is no two autistic people alike." I found every single one have hearts that are made out of the softest [inaudible 00:34:07] you'll ever see or touch or handle, and when we're screaming and when we're hitting, and when we're telling them they're not doing this right and they're not doing that right, what are we doing? We have a statistic that's alarming that we need to change.

Mary (34:18):

I've really enjoyed this interview, and I could stay here and talk to you all night, but unfortunately, I think we'll get kicked out of the studio soon.

Stephanie (34:26):

Thank you so much for having me.

Mary (34:28):

Yeah. Thanks for listening to this episode of This Ability Podcast. If you enjoy listening to our podcast, be sure to like our page on Facebook This Ability Podcast or subscribe to our YouTube channel. Goodbye everyone, and thank you for listening.