We identified 28 children with fetal alcohol syndrome or fetal alcohol spectrum disorders and were able to reconstruct the education itineraries of 19 of them. Although most of these children were initially enrolled in mainstream nursery schools, the majority of them were then referred to special educational classes or medical institutions when they were old enough to go to primary school. Those who remained in mainstream education encountered great difficulties. However, the education itineraries of these children also depend on their family situations. Finally, late medical and social intervention in their early childhood and irregular monitoring of their progress often lead to the children being put away in medical centers.
Keywords: Fetal alcohol syndrome; fetal alcohol spectrum disorders; schooling; handicap
Twenty-eight children were identified as having fetal alcohol syndrome (FAS) or fetal alcohol spectrum disorders (FASD) in accordance with the criteria in use at the time of our examination, as defined by the Research Society on Alcoholism. In addition to possible physical handicaps, these syndromes are usually accompanied by central nervous system deficiencies, intellectual deficiencies and/or social, professional and familial ineptitudes.1 The relationships between physiological, physical and social handicaps seem obvious and undeniable. For example, 43% of American children exposed to alcohol in utero, are excluded from the mainstream educational system and 70% drop out of school early.2 Thus, the future of these children is greatly jeopardized when their families and educational situations are not managed early enough and regularly over a long term. Practically, their medical follow-up should systematically go together with an education in specially adapted institutions or special educational classes (Ed). CAMSPs (Centers for Early Medical and Social Intervention) were created after the implementation of the 30 June 1975 French law on handicaps, and are mandated to screen for, diagnose and rehabilitate handicaps in children under 6. These specialized facilities welcome children with all types of pathologies and developmental disorders, depending on the number of places available. They have proven to be the most adapted structures for FAS/FASD victims. In addition, they provide a sorely needed social link as well as educational facilities (daycare centers, nursery schools, etc.), and thereby participate greatly in children's integration into the school system.
In this paper we attempted to describe the current status of schooling itineraries of FAS/FASD children with the help of medical and social services in charge of their care.
SUBJECTS AND METHODS
The medical files of 28 infants with FAS/FASD, born between 1994 and 2005, were selected from the Neonatology Department database of a hospital near Paris. Each file included names, addresses and phone numbers of physicians or members of institutions responsible for the care of these infants enabling us to contact the appropriate resource individuals to reconstruct the children's schooling itineraries. With the help of 7 of these resource people - a professor of pediatrics, 2 PMI directors, 2 social workers, 1 psychologist and 1 specialist in alcohol abuse - we contacted the GP's and institutions supervising the care of these children by letter or phone, so as to obtain recent information concerning their schooling. The doctors or facility representatives provided us with the information needed to contact the individuals or institutions to which they had referred these children for their care and education. This 'snow-ball' approach was used to reconstruct the itineraries of these babies after they had been discharged from the neonatology department, except for those still being monitored biannually in the pediatrics department of the same hospital. As far as the latter is concerned, their itineraries were reconstructed from information contained in their hospital files. …