The first thing to know about the bright-eyed toddlers who zoom, lurch, plop, play, sing and go potty at UCLA’s Intervention Program is that they are the advance guard of an army yet to mobilize.
Mostly, they act just like toddlers everywhere--but they’re not.
With varying degrees of disability due to cerebral palsy, Down’s syndrome and an array of what program director Dr. Judy Howard calls “fancy diagnoses,” they are among the world’s youngest computer whizzes.
Sure, some have poor motor skills and muscle tone, little or no speech, minimal vision--all sorts of knotty physical or mental problems. But at ages 18 months to 3 years, these toddler technocrats are already equipped with PC’s, power pads, switches, speech synthesizers and other electronic gear designed to even the playing field between them and so-called normal children.
They are part of the first toddler generation whose disabilities can be mitigated by technology, who can be judged by their potential rather than by their limitations. They are the first to prepare from babyhood for a life that will be computer-friendly in the extreme, and, as a result, productive.
Jay Horrell, 2, has used his computer since he was 18 months old. “I don’t know where we’d be without it,” says his father, Michael, who explains that some Down’s syndrome children, such as his son, are “able to receive a lot more information than they can give back. They know the answers and they know what’s going on, but can’t respond” as they’d like to.
The computer allows Jay to display and improve various skills. It talks to him and waits patiently for answers; it puts him on more even footing with classmates at the Intervention Program and with his brother in their North Hollywood home, where Jay’s setup includes an Apple PC, an electronic touch pad (in place of a keyboard), a speech synthesizer that gives voice to the letters and pictures he calls up on screen--and as many software programs as his parents can find.
Jay will attend a regular preschool in September. Down the line, Horrell adds, “I believe the computer will allow him to be a productive member of society.”
Gabriela Cellini was 17 months old, had cerebral palsy and lacked certain motor skills when her parents took her to the Computer Access Center in Santa Monica. There, a staff member explained what the toddler could do with a computer and special accessories suited to her needs.
“Gabriela took one look and was riveted to the screen,” her mother, Harriet, recalls. “Her muscle tone increased. She was so motivated to play with it that she sat up straight all by herself for about a half-hour. She quickly understood the cause-and-effect principle of hitting the switch and activating games.”
Now 2 1/2 and a student at the UCLA Intervention Program, Gabriela uses computers at her Pacific Palisades home and in class. “It’s delightful to watch,” her mother says. “This strange computer voice says ‘Gabriela, stack the blocks.’ Or ‘Gabriela, build a face.’ Or she shoots airplanes off a carrier, increasing her speed each time she scores a hit.” Gabriela still needs some assistance in other areas, Cellini says, but she’s her own person in front of the computer.
UCLA’s Howard, a pediatrician who has headed the Intervention Program since 1974, began teaming disabled toddlers with computers in 1981. She found children of that age are “automatically computer friendly, which immediately sets up a positive response in adults. Suddenly, you see they have abilities, and you start to set expectations for them that you weren’t able to set before. When you have children who cannot talk, who are visually handicapped, who for any reason cannot pick up a crayon and draw or play with dolls, puzzles and toys to show you what they can do,” it is difficult to know what they are capable of, she explains.
The first step is to find a way for each child to access the computer. In the early 1980s, there were few devices commercially available to provide that access. Now there are dozens: large switches, oversized alternative keyboards, touch windows with built-in sensors that attach with Velcro to a computer screen. And there is growing body of knowledge about how to rig the devices so a child can work the computer by using whatever part of his body he controls best. Says Howard: “Every child can work one, even if he can only use one finger, his head or a toe. With appropriate software, they can solve puzzles, build with blocks, dress dolls. They can even play all the traditional favorite toddler games--two kids at the computer together--so they learn sharing, success and winning.
“Toddlers soon start to visually track on the screen because they’re so highly motivated. They hold their little heads up and you see all the things that eventually lead to reading. That’s the purpose of all this.”
Kit Kehr, executive director of the UCLA program, says: “The younger you help these children, the better they’ll do down the road. A kid who can’t build with blocks or push cars around the way other kids can is missing essential play experiences.” He also falls behind in language development and social skills, she says.
Rev Korman, a computer consultant in special education for the Los Angeles Unified school district, remembers such a child, named Kim. “She’d had a stroke before she was born. It affected her vocal cords, so she had no speech and the doctors told her parents she’d always be a vegetable. She was 3 when they rolled her into my office in her wheelchair. I set up a communication board, a speech synthesizer and the computer, so that it would speak for her. She took about 10 minutes to learn to push the pictures that communicated her needs and wants. ‘I don’t want to go to bed. I want a red balloon.’
“We then moved to a 24-picture board, which she mastered quickly. By using this setup, she was able to communicate for the first time in her life so that people could hear her. She spent the next 45 minutes using the Muppet keyboard, and by the end of her visit she was teaching herself the alphabet.
“Kim’s parents went right out and bought the computer, the speech synthesizer, the electronic board. Now she’s reading and the whole bit.”
(Computer setups for children like Kim cost about $2,000, Korman says.)
Dr. Phillip Callison, head of special education for the Los Angeles Unified School District, has participated in the UCLA project from its beginning, and is credited with providing assistance and inspiration. He says he believes in computers for all children, especially those with disabilities. Right now, the school district can provide such equipment for severely handicapped students, he says.
(Six hundred toddlers with a variety of disabilities are using computers in 45 United Cerebral Palsy Assn. nursery school programs across the country. The projects are run by a coalition of the association, UCLA and Apple Computers.)
Many adults still know little about home computers and next to nothing about the rest of the exotic equipment needed to adapt it for use by children with disabilities. In fact, UCLA’s Kehr says that even the salespeople in most computer stores “won’t know what you’re talking about” if you walk in and ask for a power pad, a speech synthesizer and a special switch to help you adapt a PC for your child.
Jackie and Steve Brand of Albany, Calif., found little help in 1983, when they realized their 6-year-old daughter, Shoshana, “needed technology in her life.” Shoshana has multiple disabilities, including cerebral palsy and poor vision. “The standard teaching tools just weren’t working,” Jackie Brand says. Her husband took a one-year sabbatical from his teaching job, went to computer school and eventually put together a system Shoshana could use. It had a touch-sensitive keyboard with large keys and a synthesizer that gave voice to whatever she typed, so she could hear what she was doing rather than having to see it on the monitor.
“My daughter played for the first time in her life,” when she got her computer, Brand says. “By that time she was 9, and we realized we needed to establish a program so others don’t have to sacrifice years of their kids’ lives.”
The couple started the Alliance for Technology Access, which now has 43 chapters in 32 states. Each is a resource center where anyone with any disability--or parents of disabled children--can learn in informal, friendly surroundings what technology is available and how to customize it for their needs.
Nothing is sold at the centers, but they house an array of computers, access devices and information on companies that manufacture accessories not available in local stores but essential for those with special needs. The goal, Brand says, is simply to show people what they can do for themselves or their children, without making them go through “the usual hoops.”
“Typically, you go to a doctor, evaluation center or clinic where they do an extensive evaluation of a child and prescribe what they think the right technology might be. In some situations that’s needed.” But doctors and clinics are not always on target when it comes to decisions about recreation and education for kids with handicaps, she says.
Sometimes they tell parents a child won’t benefit from technology, Brand says. “But the bottom line is that each family knows their child’s potential. They need to find out what their options are and try out different hardware and software to see what works best for the child. They need to be empowered to make their own decisions. That is what the Alliance helps them do.
“To people who say we must have realistic expectations for our children, I say I hope every family (of a handicapped child) has unrealistic expectations. That’s the only way you will find your child’s potential, so that your child can show you who he is and what he can do.”
Brand’s daughter will go into ninth grade in a regular public school in the fall. She uses a wheelchair, a computer for writing and a tape recorder with special levers for recording her notes, which she listens to at night. “This is a kid who nobody would have thought could function in a regular school program, and without technology, she couldn’t. Yet she is doing phenomenally well. And she’s not unique, she is typical,” Brand says.
The Computer Access Center, which rents space from the John Adams Middle School in Santa Monica, is one of three Southern California chapters of the Alliance. The volunteer staff helps each visitor (by appointment) to understand how life for a disabled person can be enhanced through the magic of technology. And they are very up-to-date.
Last week, for example, the staff arranged a demonstration by Daniel Fortune and John Ortiz of Zofcom, a Palo Alto-based firm.
The two men have designed a device called the TongueTouch Keypad, which looks like an ordinary orthodontic retainer worn by most kids after their braces are off.
But this retainer is a wireless transmitter with built-in sensors. By touching different sensors with one’s tongue, a user unable to move any other part of his body can gain almost total control of his environment.
To the astonishment of onlookers, Fortune answered the phone when it rang without seeming to move a muscle. He turned on and off the VCR, the TV, the fan. He used the computer and explained that there is an almost “unlimited array” of equipment that can be operated (including a page-turner) with the new device, which will probably be marketed at the end of the year.
Mary Ann Glicksman, a staff member at the center, was intrigued. Her son, John Duganne, just graduated from Santa Monica High School and starts college in the fall. He intends to make animated films and already works part time, creating computer graphics for a software firm.
Duganne drives his power wheelchair with his chin, she says, but that’s about the extent of what his body can do. (He has cerebral palsy.) To work the computer on which he does his schoolwork and art, he uses a headset with an ultrasonic device and a bite switch in his mouth. If the TongueTouch could work for him, it would be an improvement, she said. The designers cautioned that it is meant primarily for people with spinal cord injuries, and that those with cerebral palsy might not have enough tongue control. But with optimism typical of Alliance members, Glicksman said she’d rather give her son a chance to find out if it works than take the inventor’s word that it won’t.
Two other Southern California branches of the Alliance for Technology Access, funded by Apple Computers, are: The Special Awareness Computer Center in Simi Valley and Team of Advocates for Special Kids in Anaheim.