My son Julien, who has Down Syndrome, will be eighteen in July. He is the eldest of three children. We live in Alès (pop. 50,000), about 70km from Montpellier. Julien is tall, slim and muscular. His appearance is very important to him and he spends a lot of time lifting weights and doing press-ups. This wasn’t always the case. When he was a baby he had a lot of eating difficulties and he had a loose bowel complaint for the first six years. Recently he has started to eat salads, but he never eats fruit unless it’s cooked. He has a slight malformation of one foot and tibia, but this hasn’t prevented him from developing. He is easy-going, good-natured and a likeable person on the whole, even if he is sometimes stubborn.
Julien’s main health problem has been a fluctuating loss of hearing because of constant ear infections. This caused language retardation and consequently anxiety and behavioural problems. Not understanding led to being misunderstood. Relationships were difficult because of language problems and he had a tendency to close up. After sixteen years doing the rounds of doctors, we finally found the solution–a bone-anchored hearing aid (BAHA). Since then, Julien has flourished enormously in personal relationships, self-confidence, language and learning skills. He is also in perfect control of his hearing-aide, lowering and raising the volume and changing the battery when necessary. He still gets ear infections for which we have found no cure. (We would be interested to know if any Frontline readers know of a cure.)
Julien went first to a crèche and then to the ‘maternelle’ (nursery school) at the age of three. In retrospect, that may have been a bit early, but his brother was then two and I was in a bit of a hurry. He moved on to primary school at the age of nine and after two years he joined a special class (CLIS) for children with learning disabilities in a fee-paying primary school (at that time, the private Catholic schools had taken the lead in integration), where he remained until he was thirteen. (There are now 25 such special classes in the primary schools in our department, which has a population of 620,000-) Julien didn’t make much progress in academic subjects and the pressure to succeed created psychological barriers. He decided it was ‘trop dur!’ (too hard!) and he wasn’t capable. His hearing loss obviously played an important part in his lack of progress and self-confidence. When Julien was thirteen, he went to a special class in a secondary school with other girls and boys with Down Syndrome. He flourished there, psychologically and socially. Although he hasn’t made enormous strides in reading or writing skills, they have improved slightly. He made friends, realised that the others had problems too and enjoyed the solidarity within the group, without critical evaluation of his progress. This is his final year in that setting.
Julien has been on several training courses for the past few years and he has learned to travel independently and use the phone (mobile). One morning a week he attends a lycée with mainstream students who are learning to become bricklayers–this is probably the equivalent of an Irish vocational school. He can continue there for two more years. He also spends one afternoon a week with the local Town Hall, working in a municipal park–cutting tress, watering, weeding, planting etc. His third training course is in a riding-school where ‘normal’ students learn grooming and mucking out stables etc. He likes all three training opportunities and we hope that he can pursue them further, continuing the emphasis on manual work and building up his autonomy.
Julien enjoys several leisure activities. At school he does judo and basketball with children from mainstream classes. He also trains (but doesn’t play competitively) with a regular basketball club once a week. He attends a theatre and dance workshop most Saturday afternoons with other teenagers with Down Syndrome, and he plays the drums with the local music school. This year he is doing an audition with his teacher, playing ‘Hotel California’. And–I nearly forgot to mention–he recently started skiing during the February holidays and after an hour a day for a week, he managed to take the ski lift and slide down the slope, turning left and right. Those of you who have tried skiing for the first time will appreciate that this is no mean feat!
A regional Down Syndrome Association (Groupe d’Etude pour l’Insertion Social des Trisomiques 21–GEIST 21) also organises extracurricular activities and a weekly workday every Wednesday. The morning is given over to talking about members’ training courses. Sometimes they buy ingredients and cook a meal together, or they may eat in a cafeteria or restaurant.
For the second time this summer I will organise a summer sports camp for six teenagers with Down Syndrome, in connection with the organisation ‘Sport Adapté’. The young people will go off to the mountains without their parents, and they will do climbing, canoeing, potholing, mountain-biking and other adventure sports–allowing them to exploit their capacities and test their possibilities in a reassuring environment.
The French educational system
In France, children with Down Syndrome are usually fairly well accepted in the crèches and nursery schools (la maternelle). However in primary school, where there is more emphasis on reading and writing skills, whether a child with Down Syndrome is integrated depends on the goodwill of an individual teacher–who must have the necessary time, energy and patience–and whether the child’s behaviour is sociable or disruptive. It is often necessary to reassure the teacher that although demands should be made on the child with Down Syndrome to help him/her progress, it’s more important that he/she should learn to live and socialise with his/her peer group.
The educational system is more or less the same throughout France. Most children attend a free state-run school. If parents are dissatisfied with the local school, they can send their children to a private fee-paying school. More and more children with Down Syndrome now continue in mainstream education whenever possible. In most primary schools, there is a special class for special-needs students, called a Classe Intégration Scolaire (CLIS), where there is no fixed programme and (usually) a specialist teacher. They may then join a special class in a secondary school, called a ‘UPI (Unité Pédagogique Intégration)–if one is available to them–until perhaps the age of sixteen or seventeen. The only UPI in our departement (The Gard) is in Nîmes–again it is in a private Catholic school–and Julien makes the 45-minute trip there and back either by train or by taxi.
Some pupils with Down Syndrome stay in the mainstream system and do very well, but for the moment, they are still the exception. We know one girl in secondary school, who is far from being at the bottom of her class. However, more secondary-school special classes are needed to cater for the OTHERS. This is seen as the best solution for many children because they can mix with other students at meal times, for sport activities or art–and in some cases for academic subjects. Alternatively, some parents choose to send their children to an Institut Médical Educatif (IME) or an Institut Médical Professionelle (IMPro). These are institutions in a sheltered environment which cater for the pedagogic needs of all children with learning disabilities, until the age of twenty.
Some adults with learning disabilities work in a workshop run by an institution called a Centre d’Action par le Travail (CAT). However, more and more are looking for work in a ‘normal’ environment. Our children are breaking new ground, they are the first generation to be integrated into mainstream society. We are confident that they will show their capacity to work, and that it will be easier for future generations.