Parents of Special Needs Kids
About the Guest
- "Your Child" is a song celebrating every life, inspired by Jennifer Shaw's personal experience with her son's early diagnosis of Sensory Processing Disorder and written in honor of special needs children and families everywhere. (4 min. video) http://jennifershaw.com/videos
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Do you have a child with special needs? Ginny Owens, Jennifer Shaw, Paul MIller, Sarah Parshall Perry, and Amy Julia Becker share stories of faith, joy, and hardship unique to parenting special children.
Michelle: Sarah Parshall Perry’s life was on track, and everything was going well. Then, she gave birth to two autistic sons; and life changed. That’s when God taught her a new lesson.
Sarah: My lesson really is that chaos can be beautiful: “You brought this into my life; 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’m totally relinquishing the control.”
Michelle: We’re going to talk about the surprising beauty that God brings into our lives through special needs children on this edition of FamilyLife This Week.
Welcome to FamilyLife This Week. I’m Michelle Hill. You know, there’s a fact: you and I are fearfully and wonderfully made—that’s what King David said in Psalm 139.
A couple of summers ago, I was teaching Sunday school to some kids at church. Our first Sunday together, we learned how God made everything: He made the world; He made the land, and the stars, and the trees, and the animals; and it was all good. Then He made Adam and Eve, and it was very good.
We are made in God’s image; we are fearfully and wonderfully made. If we go with this premise—that everything and everyone God created was fearfully and wonderfully made—then we understand that God doesn’t have an “oops” in His plan. If you have a special needs child, you probably understand some of what I’m talking about. Your child brings a special set of circumstances, and those circumstances—they’re particularly challenging; but while life is hard, there are beautiful moments; and your child was created in God’s image.
Today, we’re going to hear from five special needs parents. For you parents, I hope you’re encouraged. And for those of you who have friends, who have special needs children, I hope you can understand how you can come alongside of them and encourage your friends.
You know, there are some difficulties in raising your special needs child. Every parent wants the best for their children; they want their lives to be easy and normal. That is just what Ginny Owens’ parents wanted for her. Ginny is a recording artist. As a child, she lost her sight at age three. She talked with Dennis Rainey and Bob Lepine about her parents and the difficulties they had with raising a fearless child, who happened to be blind.
[Previous FamilyLife Today® Broadcast]
Ginny: My parents were wonderful about just making sure that my childhood was normal. You know, the neighbors would panic because they would look out and see me in the top of a dogwood tree. They would be like, “Should we call the fire department?!” My mom would always say: “Ginny’s my careful child. She’ll be fine.” [Laughter] I had roller skates. I loved skating down steep driveways and riding my bike all over the neighborhood.
Dennis: I want to stop you there. How did you ride your bike?
Ginny: You know, I don’t know. [Laughter] I think once I grew up and realized, “Oh, I could potentially go to the wrong house,” it changed my bike riding; because then I was, all of a sudden, really self-conscious about that, and who might be seeing me, and where I might be going. But before that, I just knew where everyone’s house was. Obviously, I would hear the cars and get out of the way; I didn’t think about it.
I keep trying to see if I can apply that same principle to my life now. You know, sometimes, you just have to go for it, and do things, and be brave. There was just a fearlessness. I remember having to learn to ride without training wheels; my dad running behind me, trying to keep the bike on target, as parents always do. Then, after that, it was good; I loved riding all the time.
Dennis: You also said you pranced on top of a gymnastics beam?
Ginny: —a balance beam; yes.
Ginny: My parents were, again—they just let me do anything that other kids were doing; so one of those things I got to do was take gymnastics, which I absolutely loved. I probably wasn’t any good at it; but you know, walking on the balance beam was probably very helpful for my balance. Learning how to do somersaults and all of those things was great for coordination. I even took ballet. You know, it was fun to pretend to be a princess, and to pretend to be graceful, as lots of other kids enjoy doing.
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, you know, he also knew how important it was that I learn to be independent and that I learn 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,”—cues—social cues/visual cues that I had to learn. They were really hands-on about teaching me all of those things.
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 the 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, who is displaying odd behaviors, means being an advocate for your child: possibly countless doctor appointments or a specialist appointment; then receiving the diagnosis you didn’t want to receive.
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, Toby, started developing some really bizarre and extreme behavior. He was just a baby; but you know, 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—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, and that was right at the time that my dad was passing away. It was just, for me, a very dark and difficult time; but also a time when I started to question things in my faith—you know: “Is this faith true? 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, such a relief! His diagnosis is Sensory Processing Disorder, which is SPD. It’s related to autism in that, if you’re autistic, you have it; but you can have it and not be autistic, which is the case with 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 I used to think were probably true, but now I know they are. Now, we have a very solid marriage. 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.
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, and 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; and 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, the big word they use is: “perseverate”—she’ll do something again and again. She would run out in the hallway and 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. 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; it really wouldn’t do much good; but it was just simple, like, “Kim, get back in bed.” We call it the “yelling approach” to life.
Then, two years ago last December, like quarter to five in the morning, Kim starts pacing. I started to get up out of bed; I had been convicted that I should pray with Kim. Jill says to me: “Paul, what are you going to go 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—and I keep discovering areas of my life that have been completely prayer-less like this—
Paul: —I go up, and I put my hands on Kim. I just sat down, next to her on the bed, and 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’s 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!
Then, on the other track—about four months after I started praying for Kim in the mornings, dragging myself out of bed and going up to the third floor—her running completely stopped. It just completely stopped, and she has never done it again.
Dennis: Now, were you praying that she would stop running?
Paul: Yes, I went upstairs and I prayed with her. I should have been clear—I said, you know, in prayer: “God, calm her. Help her not to run,”—you know, not very complicated; you know?—just praying what I wanted, and it has completely stopped. 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, —already, 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 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.
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. A while back, I was caregiver to a family member, who had some special needs. 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; and the disciples asked Jesus, “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 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.
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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 may recognize her mom, Janet Parshall. Sara 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 1,000; and in my case, times 3; so 3,000 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; and 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 lie in bed, going: “Okay, Lord; I really need You.”
That’s the funny thing about hardship and challenges. It’s only when you’re 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? Are you still trying to force things into the way you wish they’d happen every day?
Sarah: I would say, of a 100 percent cure, I’m like 80 percent there.
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 is 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’m 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 and it is always there, no matter the challenges we face.
Michelle: Seeing God and finding the beauty within the chaos—it can be hard. I’m so glad that we have people, like Sarah Parshall Perry, who can articulate that we’re in a long-term race; we’re in a marathon with our Savior. All of our journeys look different; 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 first-born, and daddy holds his little girl or his little boy for the first time; there are tears of happiness. 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—something beautiful.
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; 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, I guess, disorientation. I felt as though I had come, without knowing it—I was in seminary at the time—but I had come into the hospital with a theological grid. I had a child who didn’t fit in that grid. I thought that Down Syndrome—at that point, I thought: “Okay; this is something that’s wrong with the world, and that means it’s an aspect of sin. Does that mean my daughter is wrong; 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 sin in our lives, both of us had brokenness in our lives, and yet both of us also were created in the image of God. There was far more that we had in common, theologically, than what 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 out—all about these Jesus stories. They never show Jesus’ 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!” It was just—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 kind of spiritual acuity that she has that allows me to see the personal nature of our God. As someone who’s pretty cerebral, and who went to seminary and 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.
You know, she has really thrived; and we have thrived, as a family, because of her presence—not for that reason alone—but certainly, in part, because of that.
Michelle: Today, Penny is a beautiful 13-year-old girl. She’s got a younger brother and a sister. God has just blessed the Becker family.
I hope today has been an 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 serve them. As my producer says: “The smallest act of kindness is better than the grandest intention, so just do something!”
You know, if you’ve lived for very long, you know that the world comes with its own dose of stress. It’s interesting to watch how individuals respond to that stress. If you’re married—hint, hint—I bet how they respond is different than how you respond. Next week, Crawford and Karen Loritts, Emerson Eggerichs, and a few other friends will help us work through communication issues. I hope you can join us for that; it should be a really good show!
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 producers, Marques Holt and Bruce Goff. Justin Adams is our mastering engineer, and Megan Martin is our production coordinator.
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