A Senate Family Wages Its Toughest Campaign with Down's Syndrome
When Connecticut Sen. Lowell Weicker Jr. wed Camille Butler in 1977, the union seemed as much a merger as a marriage. Each brought three children by previous spouses to the new household, but both bad a desire to have a child of their own. The following year, at age 36, Camille gave birth to Sonny Davidson Weicker at Georgetown University Hospital in Washington, D.C. The child was born suffering from Down's syndrome, a genetic birth defect that strikes about one in 650 babies, causing varying degrees of mental retardation, hearing and speech impairment and other physical difficulties. (On one doctor's advice early on, Camille decided not to undergo amniocentesis, a procedure often recommended for older women, whose babies are more likely to develop genetic abnormalities.) Lowell, whose grandfather founded the Squibb pharmaceutical company, and Camille, his former Senate secretary, brought the child to their suburban Washington, D.C. home and began an intensive program of training and therapy. Recently Camille and the senator spoke to PEOPLE'S Clare Crawford-Mason about the experience that began the night of Sonny's birth.
Camille: On the way to the hospital I had a feeling something was wrong. It was June 12th and just awful out—lightning and thunder. I remember thinking I didn't want my baby born on the 13th. Lowell helped in the delivery, and we both held him as soon as he was born. He had a full face and looked just like his father.
Lowell: He was born around 2 or 3 in the morning. I left and came home, and then the phone rang at 5 or 6. It was Camille, obviously upset.
Camille: The doctor had come in and said, "There's something wrong. We're not sure, but we think your son has a problem." Within an hour the head of the genetics department came in, and he said, "There's no sense in fooling you. It takes two or three days to do the chromosome test, but I can tell you, based on my experience, that he's Down's." "Down's? What is Down's?" "Down's syndrome," he said, "They used to call it mongolism." My brother was pre-med and when I was 8 years old, I remember going into a laboratory, and there in bottles they had mongoloid fetuses. When the doctor said "mongolism," that hit like a ton of bricks.
Lowell: It was a real kick in the tail. I suppose my first thought was, my God, what an experience for Camille.
Camille: He cried. He can say "No." But he cried.
Lowell: We were crying for ourselves, not the baby. When I got back to the hospital, Camille was sitting on the bed, tears rolling down her face. The head of genetics was there. He said, "You have several options: to leave the baby now, to think about it and then leave the baby, or to take the baby home." There were no options for me; there wasn't any question or any debate in my mind at all.
Camille: We talked and we talked, and he turned to the doctor and said, "You know, this is the greatest fight that I've ever had, and I'm a fighter." I had seriously considered not taking the baby home. I thought by putting him in an institution I could pretend it never happened and start all over again. That lasted about five minutes. He was ours and we were responsible for him. If my husband was willing to try, then so was I.
Lowell: From that moment on there has never been a look back. Life goes on, and the job goes on.
Camille: We decided to name the baby Sonny because we had always heard that Down's children were sunny of disposition. When we left the hospital with him later in the week, Lowell said, "You know, Camille, it's very depressing at the office. Nobody will look at me; nobody will talk to me. I don't know what they think we've produced, but if we take the baby in, maybe that'll make a difference." Sonny was 38 hours old. We wrapped him up, went to the Senate office, and the tension disappeared. The only way people would accept Sonny was if we did. And the only way people would be glad about Sonny was if we were glad. We had so many people to prove this to, even within our immediate family.
Lowell: The popular image of the Down's child is a fat kid with his tongue lolling out of his mouth. Obesity has nothing to do with a Down's child. For many years people thought that a Down's child couldn't do anything; therefore, they just sat the child in a corner. If we all sat in a damn corner 24 hours a day with people stuffing food in our mouths, we'd be fat too. Yes, the tongue is a little bit bigger in relation to the palate, but they can be taught to control their tongue. Everything has to be taught. That's the challenge.
Camille: I had a friend who once said, "Camille, if you can't manage day to day, manage hour to hour. And if you can't manage hour to hour, just take the next five minutes." The first three months of Sonny's life drove me nuts because I wasn't doing anything; I felt like my hands were tied. The doctor said, "As soon as you start classes, you'll feel a sense of accomplishment," and he was right. When Sonny was 3 months we joined a public infant-stimulation program. The first year you're really working with motor skills. Sonny could not lift his head, and I mean we spent three months on that. The other side of the school was the mothers' meetings where I sat and cried out my problems. You feel personally responsible for your child not being normal.
My first reaction was that this wasn't fair, I'm being punished. Why me? But after about six months it dawned on me that it wasn't a "Why me?" tragedy, but "Why these children?" What did they do? Nothing happened to me, really. I have a little bit more work to do. But I resent the fact that my son is not going to have a "normal" life. I went to college; he's not going to be able to go to college. I had children; a Down's child is not able to have children. I many times said, "I really hate you, God, for doing this to this child." But I no longer say that. Now I say, "God, you were right to send him here. Because here he gets so much love."
Lowell: And how do you know he's not going to college?
Camille: As a mother of a Down's child, you're always walking a tightrope. You want to push him to the fullest of his potential, but you've got to recognize where his potential is and not push too hard. I used to worry about the time he spent sleeping because he wasn't learning. We went to the doctor and he said, "Camille, he's growing; leave him alone. He needs his sleep."
Lowell: There comes a point very early on in the Down's child's life where the learning process slows down. Whatever's going to be achieved has to be achieved soon.
Camille: And Down's children can regress. This summer we were living right on the Mystic River, boats all over the place. Every day Sonny heard the word "boat" and could sing "Row, row, row your boat" with me. But now he doesn't say "boat" anymore. It's discouraging, but I get some true rewards. Sonny does achieve; he is walking, he's running, he's doing well. He comes in at 5:30 in the morning, and he pokes open my eye and says, "eye." Half of me says, "Oh, you rotten kid," for waking me up, and the other half says, "Isn't that marvelous; he can say 'eye.' "
Lowell: It's still early; they can't make a definitive evaluation until Sonny's 3 or 4 as to how far he can go. He's enrolled in a public nursery school now in suburban Virginia that is marvelous. I think he'll be right at the top of the scale of what a Down's child can do. He has more personality, more love; he's got a sense of humor; he's got everything. I'm no great expert on Down's; we've had excellent counseling as to what Sonny needs in a technical sense.
Camille: Down's children frequently have fluid behind their ears. Part of the reason they may have trouble hearing, and then articulating, is that the fluid comes and goes and changes the way they hear words from day to day. The doctors put in drainage tubes, and Sonny just blossomed. They previously didn't pick this up until children were 5 or 6 years old.
Of course, part of coping with a handicapped child is, what do you do with the rest of your life? Right now he's a baby and he's cute. There's nothing cute about a 16-year-old with a beard, sitting on a mat soiling himself. So if parents choose to institutionalize a child, I no longer judge them. I would like to think that if Sonny's development leveled off at the 6-month level I would keep him with me forever, but I don't know that.
Lowell: If I were a babysitter, I'd rather sit with Sonny than a normal child. Down's children want to learn, to do what you do. They're not spoiled or whiny. I can sit with him for six hours and be absolutely fascinated by the way he works at everything and wants to learn everything, by the way he imitates. Even now people refer to this as a tragedy for us. It's hard to convince them otherwise because they think we're bearing our cross with a smile. There's no coping; he's not in any way a burden. We're not bearing any damn cross.
Camille: I don't agree. There was a lot of coping. It was hard for Lowell's parents at first. But now Sonny has brought everybody in our family closer together. He brings out the best in people. Lowell and I can really argue and scream, but then we realize our main goal in this world is Sonny, and isn't it silly to waste energy arguing.
When we went public with Sonny, we received hundreds of letters. The message was always the same: Just have a little patience; you will find so much joy in this child. Ninety percent of the people in our community are very receptive to Sonny. There's less fear, thanks to things like the Special Olympics and the Kennedy family. Then there is that 10 percent which is not hostile but tends to shy away. If I have a message, it's to smile at a retarded child today. Smile and shake his hand. That makes such a difference; if people would do that, they would have really contributed, not in a small way, but in a large way. My own earliest memories are of my grandmother telling me how beautiful I was. Beautiful was the word she used as every new baby came into our family, and there were many. It was not until I was well grown that I learned my grandmother was totally blind and had been since the age of 10. But beautiful was the word she used, and that was the way she saw children, with the eyes of her soul.
Two and a half years ago I was a newlywed and a mother-to-be. Like every expectant mother, I had great dreams for my child. In 20 minutes, my dreams ended. I wish I could say that I accepted immediately, but I didn't. My biggest regret in looking back was having wasted those first 24 hours with grief and tears.
Four months later I became pregnant again. One reason, awful as it sounds, was that I felt Sonny should have someone to grow up with and to take care of him. The odds were one in 100 of having another Down's child, so I had amniocentesis. Then I waited four horrible weeks for the results. I couldn't sleep nights. I'm Roman Catholic and I don't believe in abortion, but I don't know what I would have done. I was five months pregnant when we finally found out the good news. Now we are blessed with Lowell Palmer Weicker III. Tre, we have nicknamed him. He and Sonny get along great; they sit and chatter for hours. But sometimes I think, "Tre, darn it, it's so easy for you." Sonny did not walk until he was 20 months; Tre just got up at 12 months and took off. Lowell finds that difficult to deal with. He feels almost as if he's denying Sonny if he applauds Tre, so he doesn't. It's Lowell's way of dealing with things.
Lowell: I think Sonny's going to be able to lead an independent life. Obviously he will have to have people watching over his financial affairs, his living, but I fully expect that he's going to be able to do a job of some sort and live independently.
Camille: My dreams for Tre have changed. I don't care if he is the founder of a great pharmaceutical firm or a United States senator. I care that he is healthy, happy and has a deep concern for his brothers, his sisters and his fellow man. I look at my two infant sons, each so beautiful. Tre, whose eyes just sparkle, and Sonny, whose eyes have a glow. And I know that each will cast a special light on this world.
On Newsstands Now
- The Little Couple: A New Mom's Fight to Live
- Remembering Nelson Mandela
- Princess Kate's Style Secret!
Pick up your copy on newsstands
Click here for instant access to the Digital Magazine