Sho and Patreece Baraka: Raising Kids on the Autism Spectrum
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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.
Sho and Patreece Baraka: Raising Kids on the Autism Spectrum
Sho: God answers prayers in ways in which you don’t expect Him to. I think that’s the story of autism, too; autism is a different way of thinking. 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; like tapping might set them off. They experience the world differently.
Ann: Welcome to FamilyLife Today, where we want to help you pursue the relationships that matter most. I’m Ann Wilson.
Dave: And I’m Dave Wilson, and you can find us at FamilyLifeToday.com or on our FamilyLife® app.
Ann: This is FamilyLife—
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?
Ann: —“…a healthy child.”
Dave: 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 bring that little baby into your marriage, and you have no idea the stress.
Ann: —and the fights that will result.
Dave: It’s going to be awesome and wonderful, but it brings stress in the marriage.
But then, if you bring home a baby and you find out it is special needs, the stress is even greater.
Ann: Yes; we’ve already talked yesterday about how that can just create so much conflict within a marriage. We want to talk about that a little bit today too.
Dave: Yes; we have Sho Baraka back, with his wife, Patreece. You have three kids. Your second and third son—you’ve discovered, at some point—they both had autism. Walk us back to/we heard yesterday about son number two, or your first son; but then you have another, and it happens again. Can you take us there?
Patreece: 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. I was thinking, “I don’t want her life to be consumed with caring for aging parents and a brother with special needs.” I felt like, after everything we’d gone through with Zachai, our first son—that we pretty much had it figured out/that we’d decided to have another child—that we knew possibly the things to avoid, the things we shouldn’t do, and the avenues we should take that we didn’t know that they were there.
Ann: So your first two were a year and a half apart.
Patreece: Upon birth, yes. The first one was ten months old when I found out I was pregnant; and then, yes, so technically, by birth date, was a year and a half.
Ann: So when you found out you were pregnant with your third, how old were the older two?
Sho: Zachai was six.
Sho: And our daughter was seven.
Patreece: Yes, yes. And we decided that we could probably handle a third; that was a long time coming for me. Over the years, the Lord began to chisel away at the fear that lied in my heart, of knowing that apparently [God was saying], “I have a plan for this child, and I need you to have another one.” It was really pretty much just like that; and my heart was: “I’m going to pass, God. I’m not interested, because I feel like You will give me another child with special needs”; that is exactly what I said. He was like, “You just need to trust Me”; I was like, “No, thanks.”
This was a five-year conversation I was having with Him. And basically, it came down to He was like: “Just tell Me your concerns.” I said, “Well, Zachai 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 Zachai, who is also independent so it will lessen the burden on her.” God was like, “Okay; done. What else?” I was like, “We need Zachai to be a little more independent anyway, so we need him to be able to learn how to pick up things, know how to do things for himself”—things like that—"so he’s not so dependent.”
Long story long, we decided to go ahead. We had Zimri, our second son.
Ann: Well let me ask you, Sho: “What were you feeling about this whole situation?”
Sho: I was like, “Let’s go. Let’s do it.”
Ann: You did?
Sho: I wanted more children. I had concerns.
Dave: Was your son getting any easier at this point; or was it just really, really hard?
Sho: Absolutely not. He was extremely difficult, right at the height of difficult.
Ann: And where is he on the spectrum?—like he was six.
Sho: He’s considered non-verbal, but he does have words; he has language. He does not communicate 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. He wants you to role-play in a way. Highly intelligent, though—can read, can write—even at around seven and eight, he’s writing and reading.
Patreece: —before then.
Sho: He can browse the internet; yes, sight words.
Ann: So he is gifted.
Sho: Yes, he’s intelligent—just high temper; gets frustrated easy—[Laughter]—I feel like I’m talking about myself. [Laughter]
Dave: Patreece sort of gave you a look, like, “Aah, like father, like son.”I watched something you did; you talked about being in a barber shop, and he just lost it.
Sho: So Zachai—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. 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.
Well, barbershop is one of those spaces that, at that time, it was a very difficult situation. He gets in the chair—halfway through the haircut, he just starts, for no reason, he’s just irritated, because sounds and vibrations around the ears, just sensitive—[he has] a high sensitivity to things, so he just is not having it. Literally, halfway through the cut, throws a fit; he’s on the floor.
Everybody/the barbershop is packed—but here’s the beautiful thing—I’m walking out the door, and this woman just walks up to me, and just taps me on the shoulder. She’s like, “It’s going to be okay.” And I just start bawling; tears just come out of my eyes. She says, “I have a son on the spectrum, and I know what you’re going through.” I think she prayed for me. I don’t remember much after that, because I just remember just this release.
Dave: Yes, it’s like an angel; yes.
Sho: At the same time, there was a gentleman who was emailing me a lot because of a song I wrote. Well, it was a song I partnered with a guy named Propaganda, called I Ain’t Got an Answer. It was the first time I had ever [written] a song about parenting a son with autism. This guy heard this song; he kept reaching out to me.
Come to find out, this gentleman runs an organization that helps families with autism. I get home; I tell my wife/I was like: “I reached my edge; I don’t know what to do anymore.” I just went back to Facebook®. I responded to this gentleman; I was like, “I don’t know what to do, but please help me. I need help.” He said, “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 therapies. I kid you not—in about a span of a year, I would say, our son went from an individual, who was flinging himself across rooms, banging his head, wouldn’t sleep in his own bed—from those types of behaviors—to an individual, who is the most joy-filled—I don’t think it’s hyperbole; I don’t think I’m exaggerating—I don’t think I’ve seen him get upset in the last five—
Patreece: —four/five years.
Ann: Because of these techniques that you started?
Sho: Well, it started from that; but I honestly, feel—
Ann: Sounds miraculous.
Sho: No, I’ve seen the Spirit of God/prayer.
And here’s the other thing I think happened, too, is that 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.
Sho: 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.
Ann: You would react.
Sho: “You’re an embarrassment to me.” And then, the moment I realized: “Sho, you have to respond in love; you have to respond with care and gentleness,” I think that changed the way that he realized how we felt for him.
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. You talk about them when they’re in the space, or you talk around them. I remember watching a video, or maybe it was the therapist who said, “Look, they understand you. They have the intellectual capacity. They may not look; they may be stimming, and it may not seem like they’re observing, but they’re taking in what you’re saying.”
We stopped talking about them; we started talking to them. We started actually engaging him in ways that were—
Patreece: We also started giving him words; we started teaching him sign language.
Ann: —so he could communicate.
Patreece: Yes, with sign language we gave him words. We would do the sign, and say the word, and he would start responding. The things that he would need or need to communicate more often are the things that we learned and we taught him; so that way, he could have a voice. Once he started doing it consistently, the sign language kind of dropped; and he just started using the language. And then I think it just kind of skyrocketed from there.
Ann: Well, this song that you wrote with Propaganda—we were just listening to it this morning—and honestly, I was teary, listening to it; because the words are so powerful. Should we read the words?
Sho: [Rapping I Ain’t Got an Answer excerpt]
Sho: Alright; 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; it was like: “Hey, here it is in its completion.”
I remember the first time I listened to it; and I was like, “Oh! Oh, wow!” I don’t remember being that vulnerable when I wrote the song. It was just a Holy Spirit moment, like the Lord was speaking through me. Honestly, it was really my own cathartic moment.
It’s crazy; because oftentimes, what happens is people send me all kind of messages about that song. I was like, “Man, that was really just therapy for myself.” They talk about me: “That song has really spoken to me. I have these insecurities. I wonder if my son loves me because he just—or my daughter—they just want to play with my phone; they don’t care about me.”
I’m like, “Look, they just express it differently; they love you.”
Ann: That’s so powerful.
Sho: “They love you. 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 has a different assignment or a different contractual understanding with you.”
Dave: There are so many lines in that lyric. One of them that jumped out to me was: “I just wish the doctor would lie to me and tell me my son is alright.”
Dave: 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—
Ann: —“normal” in quotes.
Dave: —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.
Sho: I think, ultimately, we know we come to Christ as broken vessels. But we also come with this negotiable posture, like, “Not us, God. I came to You because You’re going to make my life comfortable and perfect; right?”
Ann: Yes; “You’re going to bless us.”
Ann: And even as we started talking about, now, you’ve decided to have a third child: “Surely, God, we won’t have another child who would have special needs.”
Sho: Yes; and the expectation that you carry with you have a particular way in which you think God should work out the situation. She had a prayer—and you can, I guess—continue the story.
Ann: Yes, Patreece; take us back there.
Shelby: That’s Dave and Ann Wilson with Patreece and Sho Baraka on FamilyLife Today. We’ll hear Patreece’s response in just a second.
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Alright, now Patreece and Sho were about to have a third child. Instead of joy and excitement, there was dread, and frankly, anxiety. They were afraid that this child would also have special needs.
Patreece: We had Zimri. He was, I guess by all expectations, he was a normal child. He did have a difficult start. I was ten days from delivering when there was no heartbeat, and they thought he had passed away in the womb. Needless to say, he’s here; and he was developing as a normal child. But then we started seeing the same signs again. My joyous footsteps began to falter, and we both started thinking the same thing.
I know I was frustrated. I remember going in my prayer closet 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 God, 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.”
Sho: Can you revisit the prayer that you had?
Patreece: When we were—I guess you can say negotiating—[Laughter]
Sho: Yes, right; the negotiations you had with God.
Patreece: —He was like, “What do you need?” I was like, “I need this child to help my daughter. I need him—
Sho: “Help my daughter help my son.”
Patreece: —"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.”
Ann: You’re not thinking of yourself; you’re thinking of the future for your daughter even.
Patreece: Yes, yes. “And so I need him to be a nurturer; I need him to look out for Zachai,” especially when I found out it was a boy. And so this was my prayer, and I 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.”We were like, “Ooohhh,”—one of those things again.
Ann: —like hope.
Patreece: Yes; hope fly to us that it’s 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.
Sho: —especially when a cartoon would come on, three rooms away: boom! [Laughter] The head of that boy hearing; that boy could hear just fine.
Patreece: But we were hoping; we were hoping.
And so we took the same steps we took with Zachai: 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.
Ann: What does that look like? What do you mean?
Sho: It’s amazing.
Patreece: It is.
Sho: It’s like one of the most amazing things ever.
Dave: 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.
Sho: Yes; he’s seven years younger/six years younger.
Patreece: When we’re leaving in the morning—I take them to school—when we’re leaving in the morning, Zachai—I love Zachai, but he’s a mess—[Laughter]—he’s [Zimri’s] just about Zachai’s life.
Sho: He’s [Zachai’s] aloof; he just kind of like exists.
Patreece: He doesn’t care if he has his bookbag—he doesn’t care if he uses it—he’s just Zachai: “We’re leaving? Okay, let’s go.” But Zimri is like, “No, we need to make sure Zachai has his bookbag. We need to make sure Zachai has his breakfast,” “Zachai, here’s your breakfast; Zachai, here’s your bookbag”; and he just takes it.
We get in the car. Zachai wants to eat in the car. When we get to school, he’s a mess. Zimri—I look in my rearview mirror, and I see Zimri brushing crumbs off of Zachai—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. [Laughter] Let me take care of you.” He’s back there, just brushing him off. Zachai is just about his business; he’s [Zimri’s] just going about Zachai’s business.
Sho: —unassuming; yes.
Patreece: But there’s Zimri.
Dave: So you tell me: “Is the lesson/the learning: ‘You can trust Him’? ‘You can trust God’?”
Patreece: Absolutely; 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.
Sho: 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; autism is a different way of thinking. 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; like tapping may set them off—so they experience the world differently.
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: “Lord, just give us somebody who can be a caregiver in some sort of way.” 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.
Patreece: He is; he will not leave school without his brother. When I pick them up, Zimri is already waiting in the front; and the older kids wait a little further back in the school. So when I either walk up, or pull up to get them, Zimri is kind of waiting. Well, we’re just waiting on Zimri because Zimri won’t leave without Zachai. Nobody told him to do that; it’s just what he does.
Ann: Well, I love what you said/you said that “God had a plan for this child, because this child is important.”
Ann: And that’s true for all of our kids: “God has a plan for our children, no matter where they are in life. 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.’”
I love that you guys are sharing this. 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. She was crying; because she said, “It feels so lonely at times.”
Ann: And then there were 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.
Sho: 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—I’ll make some hard 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 are isolated in the sense that they carry the burden that we talked about earlier, of like the shame. But they are 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 kind of issues; right?
But men, oftentimes, just are isolated or are lonely by withdrawal. They remove themselves because there’s: “Well, if I can’t do these things with this child, then why even have an interaction?” I get all this praise for interacting with my kids. I think it’s good to be affirmed as a father, like, “Man, it’s good to see you interacting with your kids.” We go to camps, and folks are like, “Why are you the only father that’s actually active? All of the other fathers are still in the tent.” It breaks my heart, because I’m getting praise for something that we should be doing.
Patreece: —should be doing.
Sho: And part of the reason is because we don’t normalize the conversation. Look, we’re going to have kids that don’t perform in a way that we want them to perform; but that shouldn’t change our affection and the way we interact with them. 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. 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, “Alright; let’s run around the house. I’ll body slam you a couple of times,”—whatever. [Laughter] 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 their affection and as much as they’re willing to bring that to me. It could be as simple as just taking them to the park, taking them to the store, taking them in public. That will start to chip away at the shame or the insecurity that you have. You never know what will build and come from that.
Women and men: I think there needs to be more of that consolation out there. I also feel that there needs to be a group of men, who just get together and just talk about the loneliness that they experience, too; men aren’t known for their emotions, and emoting in ways that are healthy, but—
Dave: —they need to.
Sho: —they need to.
Sho: We need to.
Shelby: You’ve been listening to Dave and Ann with Patreece and Sho Baraka on FamilyLife 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 Ann will be joined with Michael Kruger to talk through what to do when that happens, and how to respond.
On behalf of Dave and Ann Wilson, I’m Shelby Abbott. We will see you back next time for another edition of FamilyLife Today.
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©Song: I Ain’t Got an Answer
Artist: Propaganda, Featuring Sho Baraka
Album: Excellent, (p) 2012 by Beautiful Eulogy
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