To fully understand Project ABC you must know how it came into being. In 1981, Marian Sokol, Ph.D., was teaching in the early childhood and special education programs at San Antonio College. She was also involved with the San Antonio Coalition for Children, Youth and Families. That year, a task force of the Coalition wanted to do something for parents of special children. "We decided the best way to find out what we should do, what these parents really needed, was to ask them," says Sokol. "We were not prepared for what we heard." What they heard was that at a time when parents were faced with the most critical decisions regarding their special children, they didn't know where to go or what questions to ask. "Because our society has become so sophisticated, instead of dealing with one doctor, they were dealing with several specialists, and nobody was looking at the total situation," says Sokol. "We talked to one mother who made 22 phone calls to find out where to go for help for her child." Agencies who couldn't help a child might not know other agencies who could help. Or a child would get into a special program, only to find transportation was not provided and parents had no way of getting the child to the program. While all school districts must serve handicapped children ages 3 to 21, each district has its variances. In some districts you go to the central office, in others you go to the nearest elementary school, in others you go to a pupil appraisal center. And, if the child is blind or deaf, it can be served starting from birth. "This sort of thing caused a lot of frustration, confusion and anger on the part of parents," says Sokol. Being primarily educators, the task force decided to publish an information booklet. For the next eight months, the 12 volunteers looked for every program for special children that existed in San Antonio. The task was monumental, and frustrating. When it was decided to include which day care centers will take handicapped children, for instance, they went to the Texas Department of Human Resources who licenses day care centers. That agency said it would love to tell the group what day centers took handicapped children, but it didn't know, instead of information, TDHR gave the group 400 stamps. Eventually the task was completed, and the book printed. But instead of the job being completed, it was just beginning. "The San Antonio Light ran a story on the book," recalls Sokol, "and we were just deluged. In two days I got 37 phone calls from parents who needed this type of information and more. The temporary project became a permanent one, to be called Project ABC-Any Baby Can-because Marian Sokol believes any baby can reach his maximum potential with the right help. Sokol left her teaching job to become project director. Since Project ABC opened its doors in early 1982, the organization has referred over 1,000 babies in a thousand different ways. There are the twins, Jason and Jacob Herrera who were born premature and developed respiratory problems. When Jason went through a six-week battle with a bacterial infection, Project ABC was in touch with the young mother almost daily. There is Juan Jose Pena who was identified at birth as having periods of apnea, cessation of breathing known commonly as sudden infant death syndrome. Being on an infant monitor would identify those periods so that his mother could revive him—literally save his life. The monitors are readily available, but his mother didn't have the $200 to $300 a month to rent the machine. ABC loaned the monitor (they own four of them) and Abbey Medical graciously maintains them at no charge to parents or ABC. There is the child whose family called last week because he has a speech problem. He'll be four in November. His parents didn't know how to contact the school district or what services the district could provide. They didn't know that at age three the child was eligible for speech therapy. ABC set up an appointment for the child with the district; he'll be seen next week. There is the family with seven children, the youngest of whom has been born with Downs Syndrome. ABC will try to get the child into an early intervention program, will place a dozen or more phone calls, will find out where the waiting lists are shortest, will look at transportation needs. There is the father of a young child who was developing right on schedule until, suddenly, at 18 months of age the child began having seizures and convulsions, eventually regressing to a developmental level of five months. Not only did Project ABC find the agencies that would help the child, they dealt, very lovingly, with the denial the parents were experiencing. The father said it all when he wrote, "If prospective parents were given one wish, most would wish for a child who is healthy and whole. When a child is born with a disability or suffers an impairment at an early age, the impact on the entire family is devastating. Parents are simply not prepared for it. There are few answers, major new responsibilities, and a general feeling of helplessness; parents don't know where to turn, or what to do next.. The Project ABC staff consists of six, including a degreed social worker with 22 years experience and an assistant who has personally experienced being a handicapped child. The staff "case manages" each of the 45 to 50 referrals each month. That means after being in daily contact with parents until the child's needs are met or he is placed in an appropriate program. If they set up an appointment for Johnny to see an orthopedic doctor on Tuesday, on Wednesday ABC will call to see if the appointment was kept and what the results were. If Johnny then needs special shoes and the family can't afford them. Project ABC will go about trying to find some at little or no cost. When Johnny's problems have all been adequately solved, the case is "closed." Of the 1,000 referrals so far, about 600 are closed cases. In addition to these cases, another 45 to 50 calls for information only come in each month. Perhaps it is a mother looking for a summer camp for a handicapped child, or a parent wanting to find a day care center on the northwest side of town. These calls are documented, but not case managed. Because the agency is there to funnel through, a lot of other things also have happened. Last December they were asked if they could use some shoes for handicapped children. When they said of course they could, 400 pair of shoes were delivered. On another occasion, three pedodontists wanted to donate their time during dental health month. "So we had a whole morning of dental screening of handicapped children at no charge," says Sokol. Parent support groups also have been spawned through ABC. The parents of a child with Tourette Syndrome-a disability that manifests itself by multiple tics, grimacing, arm jerking and throat noises-started a support group of parents of children who have to live with this rare disease. In April, the Central Texas Area Chapter of the National Tourette Syndrome Association was formed; it already has 150 people on its mailing list. Another mother is currently starting a support group for mothers of infants on apnea monitors. Other needs also have been identified. One of the real needs of parents of disbabled children, says Sokol, and one that is often overlooked, is respite care, just getting out of the house occasionally. So Project ABC has trained a group of Lee High School juniors and seniors as babysitters. The students had already taken child care and development courses, but they spent additional long hours learning how to care for the handicapped child. Their services are not free, but they are available. A crisis fund was developed when parents who lost a baby requested donations be sent to ABC in lieu of flowers. It has been added to and is used very judiciously. "When we find parents who are in severe financial difficulty we go to the crisis fund," says Sokol. It might be to provide formula, which for special babies can run $6 to $8 per can. It might pay for insulin and syringes for a diabetic baby. Recently the crisis fund was dipped into to help provide cleft palate surgery for a three-year old girl. Other help came from area Kiwanis clubs and a surgeon who donated his time. The Project ABC offices are housed at Santa Rosa Children's Hospital, but are not funded by the hospital. At its inception, the model project received a grant from the Texas Developmental Disabilities Program. But because it was funded as a unique model, the funds had a three-year time limit, and the three years end in 1984. Since its beginning, other sources have been found, but they are never enough. Some money comes from the Hogg Foundation for Mental Health in Austin, but that money also terminates in 1984. The city of San Antonio supports the project, and after a long battle it was recognized as a United Way Agency. "But," says Sokol, "what we need more than anything right now is money on which to operate." She is not above doing whatever she can in that effort. Last spring she called Rabbi Harold Kishner, author of "When Bad Things Happen to Good People," and asked him to come to San Antonio to speak. Proceeds from the benefit went to enhance the crisis fund. "I can't believe I had the nerve to do thatjust call him up," chuckles Sokol. And, also recently, Humana Women's Hospital asked Project ABC to run its gift shop and funnel profits into the Project's budget. Humana donated the space and gave the project an interest-free loan to purchase inventory for the shop. In Sokol's word, Project ABC has simply "mushroomed." "None of us knew the need was so great in the beginning," says Sokol. "And I worry about how we will keep going-but I know we can't stop." So she continues to pass out literature and make phone calls and hope that people will hear and respond. Because Project ABC believes that Any Baby Can, and every baby deserves the chance to be the best that he can be. MARY C. CERRETO, Ph.D. Univ. of Texas Medical Branch MARCH OF DIMES BIRTH DEFECTS FOUNDATION STRATEGIES IN GENETIC CLINICAL INVESTIGATION STUDIES Proceedings of Third Annual Education Conference of NATIONAL SOCIETY Sponsored by National Society of Genetic Counselors, Inc. and To enhance medical communication in the birth defects field, the March of Dimes Further information can be obtained from: White Plains, NY 10605 Copyright © 1984 by March of Dimes Birth Defects Foundation All rights reserved. No part of this publication may be reproduced or transmitted in Views expressed in articles published are the authors', and are not to be attributed to Library of Congress Catalog Card Number: 84-61062 The March of Dimes Birth Defects Foundation is dedicated to the goal of preventing Sibs of Children With Chronic Conditions: Mary C. Cerreto, PhD Child Development Division, Department of Pediatrics, University of The families of handicapped and chronically ill children are receiving increased attention from health professionals. The benefits of treating the child within a family context go hand in hand with a recognition of the family as the child's primary interaction environment and the crucial social institution for child development. It is generally recognized that the child is best served by working with the family and that parental involvement is critical to therapeutic effectiveness. Reports and studies of the "handicapped family," however, have been limited primarily to considerations of the parent and affected child in a variety of areas: informing the parents of diagnosis [1, 2]; counseling concerns [3-7]; characteristics of the parents [8–10]; impact of the child on the parents [11-15]; and educating the parents about handicaps [16, 17]. The brothers and sisters of handicapped and chronically ill children have been sorely neglected. Even those studies that address the impact of a handicapped child on the family make scant reference to the effects on normal sibs [18-22]. With the growing interest in the effects of a handicapped child on the family, a series of anecdotal and clinical reports have been published indicating that the normally developing brothers and sisters in these families may be at high risk for a variety of disorders. There now exists a small body of empirical literature addressing the impact of a handicapped child on the normally developing child and noting both the positive and negative effects of this impact. As a whole, these studies delineate the concerns of sibs and provide direction for counseling and other therapeutic intervention. IMPACT ON SIBS That the effects of having a handicapped sib are long-lasting and farranging is underscored by Cleveland and Miller [23], who studied the life commitments of adult normal sibs. A questionnaire was mailed to 194 adult *This work was partially supported by grants 90-C-1772 and 90-CW-646 from the Department of Health and Human Services, Office of Human Development, Administration for Children, Youth and Families. Cerreto MC: Sibs of children with chronic conditions: Counseling considerations. In Fine BA, Paul NW (eds): "Strategies in Genetic Counseling: Clinical Investigation Studies." White Plains, NY: March of Dimes Birth Defects Foundation, BD:OAS 20(6):31-43, 1984. |