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My Son's Desire: 'I Want Home!'

December 12, 1991|ALICE KUTZIN | Kutzin is a psychiatrist in private practice in Thousand Oaks

"What do you want for Christmas, Bruce?" I asked on the telephone.


Not an unusual conversation for this time of year. But Bruce, my son, is 23 years old. He is autistic and retarded. And he likes toys.

He doesn't really play with them. He carries them around with him. But he derives enjoyment from toys just the same.

He also likes to wear nice clothes. But the flannel shirts, jeans, pajamas, underwear and socks I buy for him every Christmas will disappear by February at the latest.

Bruce lives at Agape Ranch in Arizona with other autistic and retarded young men and women. When their weekly laundry is sorted out, it is rare that Bruce gets all his own clothes back, despite my marking them prominently with a laundry marker. This is true of every institution, school and group home for the autistic and retarded I have ever heard of.

For 23 years we have been buying alphabet blocks, matchbox cars, "Sesame Street" characters, Little Golden Books, jigsaw puzzles, musical toys, Legos and other toys that Bruce likes, and, if God spares us, we will be buying them for the next 23 years. As we start our Christmas shopping for Bruce each year, our daughter invariably asks, "Hasn't he outgrown these yet?" But he hasn't, and he never will, unless a miraculous cure appears.

Unlike Dustin Hoffman's character in "Rain Man," Bruce is not an autistic savant. This year, one of his presents will be a Rubik's Cube. He won't be able to solve it any better than I can.

Being autistic, Bruce is ritualistic and compulsive. He takes comfort from getting the same presents every Christmas, every birthday and every summer vacation. Occasionally, I vary the menu by buying him a cheap digital watch (he likes to watch the numbers change), a key chain that spells out "Bruce," an Etch-a-Sketch or a pad of construction paper with glue and scissors, with which he makes collages.

Although he loves electric trains and racing cars on double-loop tracks, we cannot buy him any toys that use a transformer for fear he will touch it with wet fingers and suffer an electric shock. At the toy store we look for boxes marked "Ages 3 to 7."

Bruce comes home from the ranch for one-week vacations at Christmas and during the summer. In addition, I send him a box of toys and clothes for his birthday in May. As far as I can tell, he lives for his semiannual visits home. Although his speech is at the level of a 2-year-old's, he has no trouble saying, "I want home!" when I call him on the phone every Saturday. However, his teachers tell me he is very happy at the ranch, and in my heart I know he is. Agape is the Greek word for "unconditional love."

Our Christmas for Bruce begins in late October, when I ask the housekeeper at the ranch to inventory his clothes so I can see what he needs. Then I make arrangements for his travel home and back, usually by air. Since Bruce cannot fly alone, an escort from Agape has to fly with him, drop him off at LAX, fly back to Arizona that day and fly back to LAX about a week later to escort Bruce back to his year-round home.

That means our Christmas has to coincide with when the school can provide an escort. This year, for example, he can be with us only from the 19th to the 24th of December, so our family will open presents and have turkey dinner on Dec. 22.

In November, I send the ranch a detailed list of what to pack. This includes not only Bruce's clothes, but also his many photo albums and his Polaroid camera, which he cannot be without. Bruce has been a photo freak since he was 6.

In early December, I ask for an updated list of all the clients and staff at the ranch, so I can write everybody's first name on Bruce's easel blackboard. Since Bruce reads at a third-grade level and loves to write the names of his friends at Agape, this thoroughly delights him.

Finally, I type a tabulated itinerary of the foods he will eat and the places he will go while home, and I post it on the kitchen bulletin board. This list is the first thing he heads for after surveying the Christmas tree and his presents.

Then begins the shopping for toys. To this day I haven't figured out whether he really means toys, or just uses the word to distinguish from clothes. For example, he considers a copybook and a package of ballpoint pens, which I get him every year, toys.

While Bruce has a lovable personality and a special chemistry that draws people to him, he is not all sweetness and light. He screams often and has frequent loud tantrums, although we have finally taught him not to scream in public. He bites his arm when he is angry, and draws blood. He is extremely handsome, but it takes him one hour to get dressed in the morning, and it takes two hours of coaxing and rewards to get him undressed and in a bath at night. He compulsively wants to do the same things over and over and cannot tolerate the slightest deviation from routine.

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