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Sho and Patreece Baraka: Raising Kids on the Autism Spectrum

Family Life Today / Dave & Ann Wilson, Bob Lepine
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August 12, 2022 2:00 am

Sho and Patreece Baraka: Raising Kids on the Autism Spectrum

Family Life Today / Dave & Ann Wilson, Bob Lepine

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August 12, 2022 2:00 am

Parenting their sons' autism, Sho Baraka and his wife Patreece felt blindsided—including a loss of dreams & sense of failure. On FamilyLife Today, Dave and Ann Wilson talk with the Barakas about how God met them in their shame.

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God answers prayers in ways in which you don't expect them to. And I think that's the story of autism too. It's like autism is a different way of thinking.

Like it's not neurotypical. So they experience the world differently than us. A lot of them have high sensitivities to just different things. They can walk into a room and these lights just may set them off.

And then like tapping may set them off. And so they experience the world differently. Welcome to Family Life Today, where we want to help you pursue the relationships that matter most. I'm Ann Wilson.

And I'm Dave Wilson. And you can find us at familylifetoday.com or on our Family Life app. This is Family Life Today. So I think every parent, when they get pregnant and they're getting ready to deliver their first baby and their second or third, they pray the same thing.

What do they pray? A healthy child. Yeah.

I mean, we did. I'm guessing every parent in the world has always prayed, I don't care if he looks like this or that, but please, Lord, let him be healthy. And then, you know, you bring that little baby into your marriage and you have no idea the stress. It's going to be awesome and wonderful, but it brings stress into marriage.

But then if you bring home a baby and you find out special needs, the stress is even greater. Yeah. We've already talked yesterday about how that can just create so much conflict within a marriage. And so we want to talk about that a little bit today, too. Yeah. We've got Shole Baraka back with his wife, Patrice.

He had his feet on the table a second ago because he's got the coolest shoes ever. There they are. Welcome back to Family Life Today. I don't know what you're thinking right now. Patrice, you're shaking your head. She should be used to this now.

She is used to it. I'm laughing. And we bring up that topic because if you missed yesterday, we talked a little bit and we're going to dive in a little deeper. But you've got three kids and your second and third son. You discovered at some point they both had autism. Walk us back to, we heard yesterday about son number two, we're your first son, but then you have another and it happens again.

Can you take us there? After having a child with autism and experiencing what life was like, I began to think about what the future looked like for my daughter. And I was thinking, like, I don't want her life to be consumed with caring for Asian parents and a brother with special needs. And I felt like after everything we'd gone through with Zakai, our first son, that we pretty much had it figured out that we decided to have another child that we knew possibly the things to avoid, the things we should do.

And, you know, the avenues we should take that we didn't know that were there. And so your first two were like a year and a half apart. Upon birth, yes. The first one was 10 months old when I found that I was pregnant. And then, yes, so technically upon birth it was a year and a half apart. And so when you found out you were pregnant with your third, how old were the older two? So Zakai was six. Yes. And our daughter was seven. Yes, yes. And we decided that we could probably handle a third.

That was a long time coming for me. Because in the past when people would ask, are you guys going to have more kids? And I would just look at them with a death stare.

Like if I were Darth Vader and I could just, and just consume them from that stupid question, knowing we already had a child with autism, like, how would you ask that? I would have. But over the years, the Lord began to chisel away at the fear that lied in my heart of knowing that apparently I have a plan for this child and I need you to have another one.

And it was really pretty much just like that. And I was like, um, a hard pass, God. I'm not interested. Um, because I felt like you would give me another child with special needs.

That is exactly what I said. He was like, you just need to trust me. And I was like, no thanks. So this was a five year conversation I was having with him.

And basically it came down to, he was like, well, just tell me your concerns. I was like, well, Zakai needs help. And if we have another child and they need help, what is that going to do to our daughter?

I need someone that is going to be a nurturer and help our daughter take care of Zakai, whom is also independent. So it will lessen the burden on her. And God was like, okay, done.

What else? And I was like, we need Zakai to be a little bit more independent anyway. So we need him to be able to learn how to pick up things, know how to do things for himself, you know, things like that.

So he's not so dependent. And long story long, we decided to go ahead. We had, um, Zimri, our second son. Well, let me ask you, Sho, like, what were you feeling about this whole situation? I was like, let's go.

Let's do it. You did? Really? I wanted more children. I had concerns. Was your son getting any easier at this point or was it just really, really hard?

Absolutely not. He was extremely difficult, probably at the height of difficulty. And where is he on the spectrum?

Like he was six? He's considered nonverbal, but, um, he does have words. He has language. Um, he does not communicate like in conversation format.

He won't sit with you and talk. He does a lot of scripting, which is like, he'll watch something on a screen and he'll repeat it to you. And he wants you to like role play in a way. Um, highly intelligent though, can read, uh, can write.

Even that is that, you know, around seven, eight was writing and reading, can browse the internet. Yeah. So he is gifted. Yeah. He's intelligent.

Just high temper, gets frustrated easy. And I feel like I'm talking about myself. Yeah, Patrice sort of gave you a look like, ah, like father, like son.

I watched something you did. You talked about being in a barbershop and how he just lost it. So, you know, Zakai, the difficulty with him was when you have autism, you can't communicate. And so when you can't communicate like anybody, if you can't just communicate the things you want, it frustrates you. And you just get to a point where the only thing that you're going to understand is me throwing a fit, flipping stuff over, whatever. So oftentimes that's how he would demonstrate his behaviors to the point where he would commit violence to himself.

Not mostly to other people, but like he would bang his head on things, throw, you know, just, it was bad. And I knew that, you know, when you take him into public spaces, if you don't capitulate to his demands, there's a high chance that he's going to throw a fit. Well, barbershop is one of those spaces that at that time it was the very difficult situation. And so I knew we have about an hour within this barbershop to get the task done. And then around that hour mark, Lord bless us because we don't know what's going to happen. And I told the barber, I was like, hey, I'm on my way with my son.

Let us know. Like, you know, he's like, no, you, I'll get you in as soon as you get there. So we get there, we sit down, we wait a little bit and I'm pretty sure we're next. And then this pretty young thing walks in and he's like, hold up, wait, wait, wait.

I'm going to get her real quick and then we'll get you guys next. And, you know, he's fraternizing, flirting, trying to, and I'm sitting here just, I just know. I'm like, oh, gosh, Lord.

We probably got a good 15 minutes. So he gets in the chair halfway through the haircut. He just starts for no reason. He just, he's just irritated because, you know, you know, sounds and vibrations around the ear, just sensitive. You have a high sensitivity to things. And so he's just not having it halfway, literally halfway through the cut, throws a fit.

He's on the floor. Everybody in the barbershop is packed. But here's the beautiful thing. Like I'm walking out the door and this woman just walks up to me and just taps me on my shoulder. And she's like, it's going to be okay. And I just start bawling, like tears just come out of my eyes. She says, I have a son on the spectrum and I know what you're going through. But just, I think she prayed for me. I just don't, I don't remember much after that because I just remember just this, this release.

Yeah, it's like an angel. At the same time, there was this gentleman who was emailing me a lot because of a song I wrote. Well, it was a song that I partnered with a guy named Propaganda Caught.

I ain't got an answer. And it was the first time I'd ever wrote a song about parenting some with autism. And this guy heard this song and he kept reaching out to me.

Come to find out this gentleman runs an organization that helps families with autism. And so I get home, I tell my wife, I was like, I reached my edge. I don't know what to do anymore.

And I just went back to Facebook. I responded to this gentleman. It's like, I don't know what to do, but please help me.

I need help. And he's like, come to this conference we're having. I want to introduce you to this behavior therapist. We sit in this hotel room for two hours with this woman.

She gives us these techniques, these philosophies, ideas, these therapy. And I kid you not. In about a span of a year, I'll say, our son went from an individual who was flinging himself across rooms, banging his head, wouldn't sleep in his own bed. I've had to pull over many times because he was kicking my seat so hard in the car because I passed something like Burger King. There were times he would literally try to grab the steering wheel.

Really? And like from those types of behaviors to an individual who is the most joy filled. I don't think it's hyper, I don't think I'm exaggerating.

I don't think I've seen him get upset in the last five years. Because of these techniques that you started? Well, it started from that, but I honestly feel, I mean, It sounds miraculous.

No, the spirit of God, like prayer. And here's the other thing I think happened too is I talked about the rage and the anger that he had. I think he was just responding to the rage and the anger that I had as well. Like when he would throw a fit and the shame and the embarrassment that I would feel, I would respond. Like, you're embarrassing me. You would react.

You're an embarrassment to me. And then the moment I realized, like, show you got to respond in love. You got to respond with care and gentleness. I think that changed the way that he realized how we felt for him. I really honestly feel like he felt like love now. Like I don't have to respond with vitriol because my parents actually love me and they're going to listen.

The other thing I think we started to do is actually talk to him. Because oftentimes what happens when you have kids on the spectrum, you don't think they understand you. And you talk about them when they're in the space or you talk around them.

And I remember watching a video or maybe it was the therapist who says like, look, they understand you. They have the intellectual capacity. They may not look.

They may be stimming and like, and it may not seem like they're observing, but they're taking in what you're saying. And so we stopped talking about them. We started talking to them. We started actually engaging him in ways that were funny. We also started giving him words. We started teaching him sign language.

Yes. So he could communicate. And with sign language, we gave him words. We would say the sign, do the sign and say the word. And he would start responding because the things that he would need or need to communicate more often are the things that we learn. And, you know, we taught him so that way he could have a voice. So once he started doing it consistently, the sign language kind of dropped and he just started using the language.

And then, you know, I think it just kind of skyrocketed from there. Well, this song that you wrote with propaganda, we were just listening to it this morning. And honestly, like I was teary listening to it because the words are so powerful. Should we read the words?

It's apparent. Sometimes I think I failed as a parent and my son having autism is rough, but maybe he doesn't speak because words don't say much. Maybe he doesn't need words to communicate his love. And sometimes it's silence that causes me to stumble. It's possible he's a version of me that's more humble.

And I think my child finds more joy with playing with my phone, playing on his own. Will he shed a tear when I'm gone? I'm wrestling with the shame of an outsider's view of me because his life is a spotlight on my own insecurities. But I know that his laugh, it lights up a thousand rooms. And when he speaks to me, it's just like a flower blooms.

This has just become my own digital diary. I'm at the doctor's office just hoping they would lie to me. My son will be all right. But if he's not, my son will be all right because he is God's. Autism sickle cell, a down syndrome, still keeping the faith in the midst of hard living. We stand together because we have no other place to go.

My son and I will live and fight even though I don't have the answers. Wow. All right.

Amen. So when I wrote that song, it's crazy. He asked me to write a song about parenting.

He was like, hey, would you mind writing about your son? It was the first time. I was like, yeah, I can do that.

And I really honestly didn't even think about it. I just wrote the lyrics, walked away from the song, and then they sent me the track. They was like, hey, here it is.

And it's completion. And I remember the first time I listened to it and I was like, oh, oh, wow. Like, I don't remember being that vulnerable when I wrote the song. And it was just a Holy Spirit moment. Like, the Lord was speaking through me. And honestly, it was really my own cathartic moment. And it's crazy because oftentimes what happens is people send me all kind of messages about that song.

And I was like, man, I was really just, it was therapy for myself. And they talk about, man, that song has spoken to me. I have these insecurities. I wonder if my son loves me because he just, you know, they are my daughter. They just want to play with my phone. They don't care about me. And I'm like, look, they just express it differently. They love you.

It's so powerful. They love you. And they just love you in a different way. And you have to overcome the insecurities of whatever you think perfect parenting or the perfect child is.

God is a different assignment or a different contractual understanding with you. I mean, there's so many lines in that lyric. One of them that jumped out to me was, you know, I just wish the doctor would lie to me and tell me my son's all right. How did that expectation that we all as parents sort of have, not that our kids would be perfect, but that they'll be normal. I guess that's the word.

Normal, in quotes. And then when they don't, whether they have special needs or they just are a healthy child, but they don't live up to our expectations. You had to have dealt with that. I think ultimately we know we come to Christ as broken vessels, but we also come with this negotiable posture. Not us, God, but like, you know, I came to you because, you know, you're going to make my life comfortable and perfect, right?

Yeah. You're going to bless us. And even as we started talking about, now you've decided to have a third child. Surely, God, we won't have another child that would have special needs.

And the expectations that you carry with, you have a particular way in which you think God should work out the situation. And she had a prayer and you can, I guess, continue the story. Yeah, Patrice, take us back there. That's David Ann Wilson with Patrice and Sho Baraka on family life today. We'll hear Patrice's response in just a second. But first, our mission at family life is to pursue the relationships that matter most.

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Again, you can donate at familylifetoday.com. All right now, Patrice and Sho were about to have a third child. And instead of joy and excitement, there was dread and, frankly, anxiety. They were afraid that this child would also have special needs. We had Zimri and he was, I guess by all expectations, he was a normal child.

He did have a difficult start. I was 10 days from delivering when there was no heartbeat and they thought he had passed away in the womb. When I was at the doctor's office, I was literally across the street from the hospital and I had to be admitted. And they was like, we don't hear a heartbeat. And I was terrified. And I had to be admitted into a hospital in a maternity ward that was shutting down the next day. And so I had to call my husband and tell him, I was like, they can't find our baby's heartbeat.

They think he's dead. He rushed over. I was already admitted. But then at some point, you know, there was a heartbeat and his heart began to skip a beat. And so I had to stay monitored. And now I also had to make a decision. There was like, well, this maternity ward is being shut down tomorrow. If we induce you, you and your child will eventually have to go to another hospital that day. I had to decide whether I was going to take a risk leaving this hospital, having the child where I needed to be and stay there or having the child there and then transporting both of us. It was a terrifying decision, but we both decided to just leave the hospital and have the child where we needed to be. And needless to say, he's here.

He did have like a hernia, you know, he's fine. And he was developing as a normal child. But then we started seeing the same signs again. And my joyous footsteps began to falter. And we both started thinking the same thing.

And I know I was frustrated and I looked and I remember going to my prayer class when we started seeing those signs. I was like, God, I knew you were going to do that. It's not like I know you got, but I knew you were going to do that. For some reason, I knew when you asked me to have another child that you were going to give me another child with special needs.

I don't know how I knew that, but I knew you were going to do it. But can you revisit the prayer that you had? When we were, I guess you can say negotiating.

Yeah, right. The negotiations you had with God. He was like, what do you need? I was like, I need this child to help my daughter.

I need him. Help my daughter, help my son. Help my daughter, help my son. If this is what it's going to be, it will be difficult for me to say that my daughter will have two brothers to look after. You're not thinking of yourself. You're thinking of the future for your daughter even.

Yes. And so I need him to be a nurturer. I need him to look out for Zakat to help, especially when we found out it was a boy.

And so this was my prayer and God was like done. And as Zimri began to show signs, we had him tested first. They were like, well, maybe it's just his hearing. The reason why he's not verbally saying anything. So we were like, one of those things again, like hope.

Yeah, hope lie to us. That is not autism. Tell us that it's hearing and we can deal with this. But his hearing was perfect. He had perfect hearing. We knew that.

The cartoon will come on three rooms away. Boom. He's like, I had that boy hearing.

That boy could hear. But we were hoping. We were hoping. And so we took the same steps we took with Zakat. Babies can't wait.

They introduced him into a school that had a special needs program for pre-K. This is our life now. And so fast forward.

Zimri is now nine and he takes care of his brother. What's that look like? What do you mean? It's amazing. It's like one of the most amazing things ever. I watched something with you with your two boys and you could see that.

Just in the one minute I watched, there was this beauty there. He's seven years younger, six years younger. When we're leaving in the morning, I take them to school. When we're leaving in the morning, Zakat, I love Zakat, but he's a mess. He's just about Zakat's life. He doesn't care if he has his book bag.

He doesn't care if he doesn't. He's just Zakat. We're leaving.

OK, let's go. But Zimri is like, no, you need to make sure Zakat has his book bag. We need to make sure Zakat has his breakfast. Zakat, here's your breakfast. Zakat, here's your book bag. And he just takes it and makes sure we get in the car. Zakat wants to eat in the car. When we get to school, he's a mess.

And Zimri, I look in my rear view mirror and I see Zimri brushing crumbs off of Zakat. Nobody told him. He doesn't know that he's supposed to be doing that. He's just looking at his brother and he's like, bro, you a mess. Get it together.

Let me take care of you. So he's back there just brushing him off and Zakat is just about his business. He's just going about his various Zakat business.

But there's Zimri. So is that the, you tell me, is the lesson, the learning, you can trust him? You can trust God?

Absolutely. I have no idea what God's plan is for my son. I just know what my job is.

To love him and to raise him. And that God answers prayers in ways in which you don't expect him to. And I think that's the story of autism too. It's like autism is a different way of thinking.

Like it's not neurotypical. But they experience the world differently than us. A lot of them have high sensitivities to just different things. They can walk into a room and these lights just may set them off.

Like tapping may set them off. And so they experience the world differently. And I think even in this experience, the Lord has answered the prayer in a different way than we expected him to. And it's just a beautiful thing because we see that through her prayers of like, Lord, just give us somebody who can be a caregiver in some sort of way.

I mean, it may not be the perfect way that someone can be a caregiver. But Zimri is, in a lot of ways, almost like the big brother. He is. He will not leave school without his brother. When I pick them up, Zimri's already waiting in the front and the older kids wait a little further back in the school. So when I walk up or pull up to get them, Zimri is kind of waiting.

They're like, well, we're just waiting on Zimri because Zimri won't leave without Zakai. Nobody told him to do that. It's just what he does. Well, I love what you said. You said that God had a plan for this child because this child is important. And that's true for all of our kids. God has a plan for our children no matter where they are in life. And it's important that they're born because God loves them, cheers for them.

And you as a parent, you're saying my job is to love him and to raise him and God will do the rest. And I love that you guys are sharing this because I was just at a conference and a mom stood up who has a child with special needs and she just shared what was going on and she was crying because she said, it feels so lonely at times. And then there are other women in the room standing up.

There were six women standing up saying, that's me too, but I never talk about it. And the isolation they feel is really real. Amen.

Absolutely. I think men need to begin to address the loneliness that they feel as well because it's a different type of loneliness. Women, and I'll just, I'll make some harsh generalizations here. Women are going to feel the loneliness because as caregivers, oftentimes they're in the home. They're probably with the child the most and they're isolated in the sense that they carry the burden that we talked about earlier of like the shame. But they're also, it's hard to have friends. It's so hard because people don't invite you to things because it's inconvenient.

There are all kinds of issues, right? But men oftentimes just are isolated or lonely by withdrawal. They remove themselves because there's like, well, if I can't do these things with this child, then why even have an interaction? And I get all these praise, like all this praise for interacting with my kids. You know, I think it's good for, to be affirmed as a father. Like, man, it's good to see you interacting with your kids. And we go to camps and folks are like, why are you the only father that it's actually active? All the other fathers are still in attendance or stuff like, you know, and it breaks my heart that I'm getting praise for something that we should be doing. And part of the reason is, is because we don't normalize the conversation. It's like, look, we're going to have kids that don't perform in the ways that we want to perform, but that shouldn't change our affection and the way we interact with them.

And the more I talk about this publicly, the more that I see men talk about this, the more I hear them confess their shame and their struggle. Like, yeah, man, I don't know what to do. I sometimes have to force myself to interact with my kids because it's just like, they don't do the things that I want to do. So I just chase my kid like my youngest. I just chase him around the house. He just says tag and I'm like, all right, let's run around the house. I'll body slam you a couple of times, whatever. My other son likes to do like this performance where he plays something.

I have to repeat it. We just do that every now and then or I draw something for him. And those are the ways that they show their interaction and affection. And as much as they're willing to bring that to me.

And it could be as simple as just taking them to the park, taking them to the store, taking them in public. And that'll start to chip away at the shame or the insecurity that you have. And you never know what will build and come from that. And so, yeah, women, amen. Like, I think there needs to be more of that consolation out there. But I also feel like there needs to be a group of men who just get together and just talk about the loneliness that they're experienced to.

And men aren't known for their emotions and emoting in ways that are healthy. But they need to. They need to. Yeah, we need to. You've been listening to Dave and Anne with Patrice and Show Baraka on family life today. Have you ever felt doubtful and wrestled with your Christian faith?

I know I have. I think this is something pretty much all of us have experienced. Well, next week, Dave and Anne will be joined with Michael Krueger to talk through what to do when that happens and how to respond. On behalf of Dave and Anne Wilson, I'm Shelby Abbott. We'll see you back next time for another edition of family life today. Family life today is a production of family life accrue ministry, helping you pursue the relationships that matter most.
Whisper: medium.en / 2023-01-12 11:58:12 / 2023-01-12 12:10:36 / 12

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