Living with and Loving Our Handicapped Children

Three of our four children have handicaps ranging from moderate to severe. Our oldest daughter, Lucinda, has learning disabilities. Our sons, Doug and Wade, have continuous brain seizures which have interfered with their learning and have caused serious behavior problems. Fourteen-year-old Doug began learning to talk at age seven. His younger brother, Wade, progressed even more slowly; at eleven he is just beginning to speak. Only our second daughter, Robin—bright, sociable, and athletic—would be considered “normal” by ordinary standards.

As any parent knows, raising a family of even the most normal children involves great challenges and adjustments. To some, our challenges must seem great. But with the Lord’s help and an abiding love for our children, we are a remarkably happy and well-adjusted group. Let me share some principles that have made this possible.

I vividly recall driving down the freeway one day with our son Doug, then just a little boy. We were going fifty-five miles per hour, and he suddenly opened the car door. I was terrified. It wasn’t until several years later that we found out that Doug is legally blind. He sees anything beyond a few feet from him as merely a blur. He probably opened the car door that day because he couldn’t see we were traveling. As far as he could tell, we were just sitting in the car.

Discovering that Wade was also blind explained why he couldn’t sit quietly through a movie or the circus, much less sacrament meeting. Now we understand why he behaved better when we sat right up front at church. When we sat farther back, he was naturally noisier because he couldn’t see anything.

We’ve learned from this that a child who is being a problem usually has a problem. The parents’ role is to find out what the problem is and then help him with it. Problems won’t just disappear—there are no quick solutions—but getting to the source can begin a slow healing. We have to look at why a child behaves as he does, not just at the outward symptoms.

As nursery leaders in our ward several years ago, my husband and I used another principle we learned at home. Nursery snack time can be chaotic—thirty children calling for cookies. Rather than reprimanding them, we would find a child who was being quiet and say, “Amy’s being quiet; she’s ready for a cookie.” Then we would find another quiet child. In a couple of minutes, the whole group would be silent. They learned quickly, and we rarely had any more table banging.

These kinds of instant results don’t always happen at home, of course. But as much as possible, we try to reward good behavior and ignore problem behavior. Our children’s problems have been such that we would otherwise be correcting, criticizing, and punishing them constantly. “Get out of that.” “Stop doing that.” “Leave that alone.” “Be quiet.” We would have no positive relationship with them at all. Instead, if a child is doing something I would rather he didn’t, I might say, “Let’s get a book and have a story,” or, “See what you can build with these blocks.” We’ve found it better to try to occupy them with something else, than to complain about what they are doing wrong.

A third important principle was much harder for us to learn: Patience. On a day-to-day basis, patience is usually the skill in highest demand. When none of the other techniques seem to have any effect, we find ourselves trying to muster more patience.

Of course, it’s not easy. But I resolved early not to physically punish my children for their behavior. I believe that physical punishment to children who don’t know they’re doing wrong would be abusive and inappropriate. I try to remember that they’re not deliberately causing trouble.

When our youngest was about three, he really enjoyed breaking eggs. If nobody was supervising him, I’d find him surrounded by up to three dozen eggshells in the middle of the kitchen floor. And there might be five pounds of sugar dumped on them. He was not deliberately being a bad boy; he was just looking for something to do.

By age six, he could ride a two-wheeled bike, which added to his mobility. But he had absolutely no judgment. (At the time we didn’t know he couldn’t see.) He would be out in the road in front of cars before we could stop him. At this point, life was very difficult. He had the mobility of a hyperactive eight-year-old, but functioned mentally like a two-year-old. We kept all the doors and windows locked and held his hand whenever we were out with him.

To complicate matters, he could not speak and would scream for hours at a time. We didn’t know why he screamed, so we couldn’t help him. Doctors were more sympathetic than helpful. Once, when he screamed all night and we could find nothing wrong with him, my husband and I put him in bed with us to see if he would settle down. But it didn’t help; he lay there and kept screaming. At 1:00 A.M., the doorbell rang. A little alarmed, I looked out the window. There was a police car with lights flashing. Apparently an alarmed neighbor had reported us.

The officer said, “Do you have a little boy?”

I said, “Yes, I do.”

“What’s he doing?” he asked.

“Screaming,” I replied.

“Why is he screaming?”

“I have no idea.” I said.

At that point, I wasn’t very patient with the problem. But because of my resolution not to resort to physical punishment, I avoided actions I would later regret. Many people questioned our handling of the situation, particularly because our children look normal. At times I thought perhaps they were right.

But we later found out what was causing Doug’s and Wade’s problems: constant brain seizures that disrupt the electrical activity of the brain, causing hyperactivity, learning disabilities, and serious behavior disorders. We are grateful we stuck to our resolve. Punishment wouldn’t have helped at all.

These experiences have convinced us that parents should follow their own feelings and use their own judgment on how to treat their children. Other people, even experts, see your children infrequently. But parents, who live with them, must be responsible for making the final decision on the kind of care to give them.

One of the most difficult things about having a handicapped child is the feeling that we are the only ones struggling—that we are the only ones who aren’t just sailing through life. Even though we are doing well now, it hasn’t always been easy to handle. I recall one period when the problems with one of the children were particularly overwhelming, and I was having trouble with my feelings about him.

“I can’t cope with this anymore,” I told my husband. “He’s ruining our family; he’s ruining our lives. There have to be places where they put children like this, places where they know what to do with them and how to raise them.”

My husband said, “You don’t really mean that.”

“But I do,” I said. And at the moment I did. I didn’t feel like I could wake up another morning and have to face living that way again.

That night, I prayed to Father in Heaven. “My earthly father wouldn’t make me go through this,” I pled. “He loves me and knows what this is doing to us. He has no power to control this, but you do. Please take away this problem so we won’t have to live this way.”

The next morning, I discovered I had been blessed. Things were different—mainly in my own heart and in my own attitude. I was better able to deal with the problems. The children seemed to have changed; they were easier to manage. But I’m sure the greatest change was within me. I’ll never forget how I felt that day.

Since then, we found a doctor who correctly diagnosed the boys’ problem. And anti-seizure medication has made a remarkable difference in their behavior. We have been so grateful.

We’ve learned that children need love most when they seem to deserve it least. When they’re acting in a way that you think you just can’t stand, that’s the time you need to show them a lot of love. Go over and put your arms around them and ask, “How can I help you?” Tell them you love them. That will correct more bad behavior than anything I know.

We still have problems and challenges. Our children require extra work, extra effort, and extra responsibility. But we also receive extra blessings. We know of the premortal existence of spirits. We feel that when we know who our children really are, we will say, “Oh, my goodness—so that’s who you are.” And then we’ll think back and hope we’ve made every effort to bless their lives. Our children do need special care, and we want to give it with love.

Helping Handicapped Children Be Involved in the Ward

Over the years, people with handicapped children have asked, “Where do your children go when you go to church?” I always reply, “We take them with us.”

Many have said, “We can’t do that. The people in our ward don’t accept our children.”

We believe all wards are filled with accepting, compassionate people—just like ours. Here are some ways we’ve helped our children have more successful experiences at church.

1. We’ve helped ward leaders accept and work with our children. When we moved into a new ward, the members of our bishopric were eager to learn how they could help. We recommended that they study Teaching the Handicapped, a Church-produced packet of books and tapes containing excellent help on involving the handicapped in the classroom. (Available at Salt Lake Distribution Center; stock no. PBIC0187; $5.00.) The bishopric shared this training material with teachers and leaders in Primary, priesthood meeting, and Sunday School. After about a month, the bishop called and said, “We’re ready. We’d like you to bring your children to their classes.”

2. We help the other children accept ours. When our eight-year-old entered Cub Scouts, I first attended a den meeting without Wade. I took a treat for the boys and explained to them that Wade was like them in many ways—he loved swimming and bike riding. I also explained that he was different from them in other ways—he couldn’t do some things they could, like read or write. I told them that Wade was just learning to talk, but that he could understand everything they said. I said we trusted them to help Wade and treat him kindly. They were very receptive.

3. We find ways to help our children participate as fully as possible. When Doug became a deacon, his quorum worked out a plan to help him fulfill his assignments. Every week Doug would pass the sacrament to the same rows so he wouldn’t get confused. In Scouts, Wade hasn’t earned many beads or arrows, and we don’t expect more of him than he can do. But he’s gone on field trips and enjoys the pinewood derby.

4. We give our children gentle reminders to help them behave appropriately at church. On our way to church, I often say, “Remember how quiet we are in church?” We also remind them often of the plan for the day: “We’re going to sacrament meeting now. That’s where we have the bread and water and sing songs. Then you’re going to Primary. You’ll go with your teacher and hear a story. Then we’ll go home and have dinner. In the middle of sacrament meeting if someone asks, “Going home?” I have to remind him again.

5. We’ve found some ways to curb disruptive behavior. When I saw one of my sons being dragged out of class, I knew he had been a chronic problem—and I wanted to become involved in helping him learn acceptable classroom behavior. So we made a card for him to take to class each Sunday. On the card were boxes for his teachers to check, indicating whether or not he had behaved appropriately. We held no threat of punishment over him, but knowing that we expected more from him has made a lot of difference.

6. We’ve been willing to experiment. Wade’s Primary teacher was frustrated because her lessons went right over his head. When the presidency approached us with the idea that he have his own teacher, we were not offended. After trying that for a while, though, Wade seemed to be missing the association with other children, so he returned to his regular class. We’re grateful that our ward leaders are willing to try different approaches with our children.

7. We take risks. After we had been in our new ward for a short time, we were asked to present the sacrament meeting program. We decided to include the whole family. Doug gave a short talk, even though the congregation probably couldn’t understand it all. And Wade, who could not speak at the time, held up pictures as I told a very simple story. We felt very vulnerable, but the members of our ward responded with great warmth and an outpouring of love.

8. We try to keep our expectations of ward members realistic. We haven’t expected our children’s classmates to come over to play with them. If a twelve-year-old is functioning on a six-year-old level, how could he play with boys his age? It is realistic to expect people to accept and include our child in a classroom situation without feeling uncomfortable. But many people, especially children, cannot deal one-on-one with someone different for long periods of time. We accept that without bitterness.

9. We have kept attending church meetings. In the early years especially, handling our children in church was very difficult. But we decided that we needed to be there every week and that our children did, too. Our consistent church activity has brought strength and blessings we’ve needed.

10. We try to be forgiving and understanding of others. We’ve learned that it’s never too late to renew our relationships that may have been damaged by misunderstandings or hurt feelings. If you feel your children haven’t been accepted, it isn’t too late to honestly and kindly explain your feelings to your bishop, and to begin finding a way to help your children take part in your ward. Creativity, humility, and sincerity can solve problems you may have considered impossible to approach.

[illustrations] Illustrated by Mark Robison

Pat Cowley, Mother Education teacher in her Brigham City, Utah, ward, is the mother of four children.