Parents of Special Needs Kids

Episode Transcript

Bob: Did you ever ask your mom why she was as hands-off with you as she was? I’m imagining myself, as a parent, and thinking, “I would be diving in to try to protect.”

Ginny: Well, I think she did in her own way; but I think she knew that I had to learn to be involved in life. I think my dad—just having grown up with a blind person as his mother—he also knew how important it was that I learned to be independent and that I learned to take care of myself.

I would say they weren’t really hands-off; they just insisted that I do everything other kids did. In a way, they were more hands-on. My mom/she didn’t want me to have nervous tics or do different things. Somebody has to tell you: “Hey, the world can see you doing that; you don’t want to do that,” “You want to look in the direction of the person you’re talking to,”—and cues: social cues/visual cues that I had to learn. They were really hands-on about teaching me all those things.

[Studio]

Michelle: That is Ginny Owens telling Dennis and Bob about the special parents that raised her. Even though she couldn’t see a thing, she learned how to ride a bike; she took gymnastics and ballet; she climbed trees. In one sense, she is what we would call a normal kid. But you can imagine that mom’s heart as her daughter learned how to ride a bike for the first time. I mean, there had to have been that pride of going, “Oh, she got it!”; but there was also that great mixture of anxiety/of what-ifs: “What if she crashes into the tree?” “What if she ends up at the wrong place?” “What if she falls off a cliff that she didn’t know was there?”

Being a parent is tough; but if you have a special needs child, that parenting calling has extra layers of toughness to it. Parenting a child that is displaying odd behaviors means being an advocate for your child, possibly countless doctors’ appointments or a specialist’s appointment, then receiving the diagnosis you didn’t want to receive. But when doctors told Jennifer Shaw that her two-year-old son, Toby, had something called a sensory processing disorder, she was kind of relieved.

 [Previous FamilyLife Today Broadcast]

Jennifer: Our youngest child started—Toby—he started developing some really bizarre and extreme behavior. He was just a baby, but he never learned to talk the way babies do. They start to babble, and then they start making words. He never did that; he just cried all the time. He couldn’t eat; he couldn’t be touched. It got to the point, by the time he was about two—that he would just sit in his red chair—and he didn’t move; he didn’t play; he didn’t talk; he didn’t eat.

We didn’t really know what was wrong with him; that was right at the time when my dad was passing away. It was just, for me, a very dark and difficult time but, also, a time when I would say I started to question things in my faith: “Is this faith true?”—like—“Can you stand on it when things are really bad?”

Dennis: How long did you go before you got some kind of diagnosis?

Jennifer: Toby was diagnosed at 24 months, pretty much exactly on his second birthday. When we got the diagnosis, it was as you said, it was such a relief. His diagnosis is Sensory Processing Disorder, which is SPD. It’s related to autism in that, if you are autistic, you have it; but you can have it and not be autistic, which is the case of Toby. It’s a neurological disorder, where his brain wasn’t processing sensory input correctly. It looks really different in different children, because it’s on a spectrum. You can either over-respond or under-respond to sensory input; in his case, he was completely over-responsive to touch. What that means is his brain was misinterpreting it.

Dennis: What was the impact of this on your marriage? I mean, it had to be dramatic.

Jennifer: You know, for me, all I can say to people is: “It can’t have no effect. It’s going to have an effect, one way or another.” In our marriage, it actually strengthened our marriage. I don’t give any credit to myself in that. To be real honest, my husband stepped up in a way that was truly sacrificial and was the hands and feet of Christ to me.

Our marriage is much stronger than it was before this happened with Toby. I would have said we had a very happy marriage before we went through all of this with Toby; but it was the time that the Lord showed Himself to be faithful in ways that—you know, I used to think were probably true—but now, I know they are. Now we have a very solid marriage; and I know the character of my husband, and I respect it very much. That has been a tremendous blessing that God brought out of pain.

 [Studio]

Michelle: That’s Jennifer Shaw. Jennifer has written a book out of her experience and out of that pain called Life Not Typical: How Special Needs Parenting Changed My Faith and My Song. Jennifer’s also a singer/songwriter. In fact, she’s written a song celebrating every life; that song is Your Child. We have a link to that video on our website, FamilyLifeThisWeek.com; FamilyLifeThisWeek.com. Check it out; you’ll be blessed.

If you don’t have a special needs child in your home, you probably don’t know what happens behind the scenes. Paul Miller and his wife Jill are parents to a profoundly autistic daughter; her name is Kim. Recently, we talked with Paul. He gave us a glimpse of what parenting a special needs child can look like.

 [Previous FamilyLife Today Broadcast]

Paul: One of the things that autistic kids will do is, sometimes, they’ll—the big word they use is “perseverate”—she’ll do something again and again. She would run out in the hallway, and she would flip the light on, run back to bed; stay in bed for five minutes; then run back to the hallway and flip it off. She would do that for like an hour.

I could sleep through this; Jill couldn’t, so Jill would tell her to get back in bed. Because there were three doors separating us from Kim, and one floor, she had to tell her loudly, which sounds a lot like yelling. [Laughter] Jill would yell at Kim, and it really wouldn’t do much good. It was just so simple—like: “Kim, get back in bed.” We call it the yelling approach to life.

Two years ago, last December, quarter to five in the morning, Kim starts pacing. I started to get up out of bed, because I had been convicted I should pray with Kim. Jill says to me, “Paul, what are you going to do? Are you going to go yell at Kim?” I said, “No; I’m going to go pray with her, because yelling hasn’t worked for ten years.” She started laughing. She said, “What do you mean, ten years? It’s been twenty years!”

I went up—I keep discovering areas of my life that have been completely prayer-less like this—I go up, and I put my hands on Kim, just sat down next to her on the bed. I just prayed for her that God would just quiet her. As soon as I started praying for her, I knew something that I hadn’t known before. It was just so clear; I knew that I had underestimated Kim’s ability to pray on her own and to own her own behavior.

In two years and four months, I have not forgotten that. It’s led to Kim and I having a longer prayer time/a separate prayer time every morning. Kim has started to tell people she’s praying for them. She’s starting to pray more in the middle of her anger meltdowns. It’s kind of neat to see what God’s done with that.

On the other track—about four months after I started praying for Kim in the morning, dragging myself out of bed, going to the third floor—her running completely stopped. It completely stopped, and she’s never done it again.

Dennis: Now, were you praying that she’d stop running?

Paul: Yes; I went upstairs; I prayed with her—I should have been clear—I said, you know, prayed, “God, calm her; help her not to run.” Not very complicated, just praying what I wanted. It’s completely stopped, and it stopped because we moved. What we hadn’t known was there was a factory across the street, and the diesel trucks would start up and awaken her.

Here’s the mystery of prayer—and this is where you have to watch cynicism—we were already planning that move. We already had an agreement of sale on our house, prior to that prayer. The cynical person would say, “You didn’t need to pray; it would have happened anyway.” I would say, “I have to be like a little child, and I just have to go to my Father with what I see.” You can’t reverse-engineer prayer; you just have to be like a little child.

 [Studio]

Michelle: That was Paul Miller. Did you catch the last words that he said?—“You can’t reverse-engineer prayer. You need to pray like a child.”

If you’re a parent of a special needs child, I can identify with you a little bit. Awhile back, I was caregiver to a family member, who had some special needs; and it was a tough situation. But I received comfort from the passage in John 9—you know the one I’m talking about; right?—where there was a man born blind. The disciples asked Jesus, “Well, who sinned?—the parents or the child?”

Here’s what Jesus came back with: “This happened that the works of God would be displayed through this”—special needs—“man, who was born blind.” I hope you can draw comfort from that like I did.

Hey, we need to take a break. On the other side, we’re going to take a look at how God uses special needs parenting to fine-tune our relationship with Him. In two minutes we’ll be back.

[Radio Station Spot Break]

Michelle: Welcome back to FamilyLife This Week. I’m Michelle Hill. We’re talking about special needs kids on the broadcast today and encouraging the parents who are parenting them. Before kids, Sarah Parshall Perry worked in the professional world. In fact, you might recognize her mom, Janet Parshall. Sarah was an in-control lady, and she was in charge of everything. Then God blessed her with two very active little boys, who happen to be autistic.

 [Previous FamilyLife Today Broadcast]

Sarah: My previous response to handling hardship and difficulty was to squeeze it as hard as I possibly could. I thought, if I perseverated on something long enough, I could come up with a solution.

Dennis: —and fix it.

Sarah: —and fix it! That’s exactly it. “If I just stay awake long enough at night, turning it over in my mind, I will have that bolt from the blue and I will figure it out.”

Well, the thing about kids is they do things, you don’t see coming, every single day. It’s like that, except times a thousand. In my case, times three/so three thousand times harder than that.

The Lord really did see that as an issue in my life; I didn’t realize it was an issue until I had these kids. I thought, “Well, shoot; I can’t predict anything about this. Now, I don’t know how I’m going to handle it.” I would lay in bed, going, “Okay, Lord, I really need You.” That’s the funny thing about hardship and challenges. It’s only when you are so weighed-upon by challenges that your knees are on the floor and you’re going, “Okay, that’s it, Lord. I give up. You have to come up with a solution, because I can’t figure one out on my own.”

Bob: I had a friend who said, “Anything that drives you to dependence on Jesus is a good thing,—

Sarah: That’s it!

Bob: —“no matter what it feels like in the moment.”

Do you feel like today you are cured of your planning obsession and your—are you still trying to force things into the way you wish they’d happen every day?

Sarah: I would say—of 100 percent cure—I’m like 80 percent there.

Bob: Okay.

Sarah: I think we have an inclination, as sinners, to fall back into our own ways. I really have to pray about that a lot: “Lord, help me not to spend time getting anxious about this.” The Lord’s very clear about worry and anxiety. “Help me to just give this to You. You brought this into my life,”—again—“You do not make mistakes; this is part of Your divine design. I can’t see it—this is a long-term race that I’m in with You—so You just bring it to fruition. I am totally relinquishing the control.”

My lesson really is that chaos can be beautiful. Sometimes, it is just order in disguise; because the Lord permits things in our lives that appear to fall apart, but His design is perfect. It is always there, no matter the challenges we face.

 [Studio]

Michelle: Seeing God and finding the beauty within the chaos—it can be hard. But I’m so glad that we have people like Sarah Parshall Perry, who can articulate that we are on a long-term race; we’re on a marathon with our Savior. All of our journeys look different, and some have more struggles than others; but through it all, He is there when we can only recognize it as chaos.

You know that happy day, when a mother gives birth to her firstborn, and daddy holds his little girl or his little boy for the first time, there are tears of happiness. But those tears of happiness can change to fear for the future in just a matter of hours. That’s what happened to Amy Julia Becker when the nurse came in with the news that the doctor thought her newborn had Down syndrome. Now, that’s a shocking change of events for any new parent; but I want you to hear how God changed those fears for the future into something else—to something beautiful.

 [FamilyLife Today Broadcast]

Amy: There was this medical fear piece; but then there was also just the fear of not knowing—having had, without even knowing it, a certain set of expectations of who my daughter would be—

Dennis: Oh, yes?

Amy: —and feeling as though they had all been completely swept away. There really was a huge adjustment in my mind, in my heart, and in my faith to understand who my daughter was and to really—instead of seeing her as a problem that needed to be solved or fixed—seeing her as a baby, who needed to be loved, and really beginning to receive her as a gift.

Dennis: Let’s talk about the faith component of that. I really want to know how you processed that.

Amy: I felt some degree of guilt, fear, and just the/I guess the disorientation. I felt as though I had come, without knowing it—I was in seminary at the time—I had come into the hospital with a theological grid, and I had a child who didn’t fit in that grid. I thought that—“Okay, Down syndrome,” —at that point, I thought—“Oh, this is something that’s wrong with the world, and that means it’s an aspect of sin. Does that mean my daughter is an example of what’s wrong with the world? How do I love her? How does God love her? What does this mean?”

I had her in this different theological category, when what I needed was to understand the ways in which both of us had sinned in our life/both of us had brokenness in our lives; and yet, both of us also were created in the image of God—that there was far more that we had in common, theologically, than that was different. That took a long time for me to work out—not only in my brain—but also in my heart.

Dennis: How have you seen Him in a Down syndrome little girl? How have you seen God?

Amy: Penny has a spirit to her that helps me to see God. I remember, when she was very little, she was, even at age two, very enamored with Jesus. I remember we had this book—it was a wonderful book that Moody Publishers puts it out—all about these Jesus stories. They never show Jesus’s face; you always see Him from the back. She just said over, and over, and over again: “See Jesus.”

Similarly, in that same book, there was a story of the Good Samaritan. She was appalled, as a two-year-old, that there was no one who would stop and help the man. She kept saying: “Me help; me help!” “Mama help; Mama help!” Even to this day, if she sees an ambulance, she will say, “Mom we need to pray.” There’s just this attentiveness to the needs of others and faith that God will respond to those needs.

There’s some sort of spiritual acuity that I think she has that allows me to see the personal nature of our God. As someone who’s pretty cerebral—and who went to seminary, so knows all of these abstract ideas about God—it can be easy for me to forget that God cares about us in a personal way and that God actually, in His being, is able to attend to the very mundane details of our lives. Penny reminds me of that, day in and day out.

She has really thrived; we have thrived as a family, because of her presence in it—not for that reason alone—but certainly in part because of that.

 [Studio]

Michelle: Today, Penny is a beautiful 11-year-old little girl. She has a younger brother and a sister, and God has just blessed the Becker family.

I hope today has been encouragement to you if you have a special needs child. If you don’t have a special needs child, I hope it has opened your eyes to how you can come alongside families within your church, or even your neighborhood, and how you can love on them and how you can serve them. As my producer says: “The smallest act of kindness is better than the grandest intention, so just do something.”

Next week, we’re going to talk about grandparenting. Some of you grandparents are finding yourself in a new role—perhaps babysitter or a teacher—your children are needing help with their children, whether it’s due to COVID and the school situation or other life factors. We’re going to talk about the role that you, as a grandparent, play and how you can best leave a legacy for your grandkids. I hope you can join us for that.

Hey, thanks for listening! I want to thank the president of FamilyLife^®, David Robbins, along with our station partners around the country. A big, “Thank you!” to our engineer today, Keith Lynch. Thanks to our producer, Marques Holt. Justin Adams is our mastering engineer, and Megan Martin is our production coordinator.

Our program is a production of FamilyLife Today, and our mission is to effectively develop godly families who change the world one home at a time.

I’m Michelle Hill, inviting you to join us again next time for another edition of FamilyLife This Week.

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