"To Free the Dream"
A Training Course for Parents

by Francesco Stefani

The active involvement of parents in education is a sign of vitality in the family and acceptance of the reality.

The last training course for professionals and parents of blind or low vision children took place on the 21st of February. It was offered by the Parents Committee of the Bolognese section of the Italian Blind Union and organized by Bologna's Istituto Francesco Cavazza with funding by the Fondazione della Cassa di Risparmio of Bologna for Project C.I.F.R.A. It took place in the rooms made available by the Quartiere Santo Stefano.
This was an ambitious initiative to provide answers to an ever-emerging reality in the world of disability, that is that families, where lives a person with a disability, are becoming the reference point for rehabilitative and educational interventions for the disabled person while they, in turn, need to be supported, encouraged and also specifically trained.
Organized based on this idea, the course introduced long-time experts working in the field with considerable knowledge and hands-on experience, and parents who, out of necessity, have sometimes improvised, but nevertheless have become experts in blindness.
The aspects discussed can be summarized in three main ideas:
- Reorganizing the relationship and strengths in the couple from the moment when the child's disability is identified (3 meetings);
- Identifying educational and rehabilitative intervention strategies for the child (3 meetings);
- Identifying institutions and associations which are the external reference for families (4 meetings).
The aspect directly linked to the personal experience of parents who find themselves discussing their own certainties and acquired habits when the child's blindness happens, sometimes at birth, sometimes later, was handled specifically by two psychologists from the Istituto Scientifico Eugenia Medea with La Nostra Famiglia di Bosisio Parini, and by Salvatore Lagati from Trento's Consulting Service for Children.
Eleonora Maino and Onorina Schiano have presented the results of some research to shed light on the evolution of the styles of behaviour of a couple experiencing such a considerable event. They have helped parents relive their own experience, certainly difficult and painful, but also intensely gratifying and enriching. They have brought to the fore how the certainty of an initial diagnosis has a reassuring and calming effect for parents, while on the contrary, an uncertain diagnosis, suspending between hope of healing and resignation to the irreversible damage, creates a factor of destabilization and anxiety which often precludes the possibility of positive and productive reorganization of family dynamics and interpersonal relationships.
The message is that the hardship parents are facing can be overcome and the couple's relationship can become stronger in the end, positioning itself at a higher human level of maturity and awareness. Without such hardship, this level in the relationship may otherwise never have been attained.
Nothing, however, is to be taken for granted. If there is not a more profound dialog and stronger and reciprocal support within the couple; if there is no openness to the outside world, with other couples who have experienced the same thing, and with trustworthy and competent professionals and institutional references, the couple is leaving it up to insufficient resources and may not be able to cope.
Fears, feelings of guilt, perceptions of inadequacy, anger, resentment, attempts at self-defence can lead to denying the problem, entrusting the situation to another person, ultimately declining any responsibilities and running away from family and child.
In truth, the couples taking part in the meetings and their own accounts have confirmed that in most cases, if not all cases, there is a real possibility to cope with the situation and overcome its difficulties while keeping in mind that once the very difficult initial impact has been overcome, it is not possible not to go on. This in fact goes against a second type of risk due to a wearing effect, continuous stress, tiredness because of overwork, which can lead, if not kept under control - and the training course has been thought up exactly for this - to a slow but progressive loss of motivation and energy.
Among the most effective antidotes to this danger is the natural activity of psychological prevention, which is done by maintaining good social relationships with other families. In a more specific and programmed manner, there are those opportunities of encounters between parents and children together, for example the week stays in Trento as proposed by Salvatore Lagati. Parents who have taken part in these have offered extremely positive and convincing accounts.
In regards to the meetings on activities aimed at the growth and development of the child's resources, numerous experts, some of them working at the national level, have taken part in the discussion: Enzo Bizzi, Stephan Von Prondzinski, Marina Vriz, Riccardo Chiarelli, Roberto Penzo.
The message that they have agreed to communicate to parents and professionals, also in the specificity of interventions, is that of a healthy but active realism, which leads one to clearly realize what could be missing in the child and what there is available.
Taking into account what comes missing because of total or partial lack of sight, which entails sometimes ulterior risks, it is fundamental to understand what part of the child's intellectual, motor and psychological development is put at risk and therefore what should be done and when, so that the disability does not affect the person's development.
At the same time, it is fundamental to recognize the resources available to the child, particularly so in increasing cases of multi-disability, because through alternative sensory channels, which primarily are the senses of touch and hearing, can travel the stimuli and information necessary to building a personality in its cognitive, emotional, psychomotor and relational aspects.
There are many tools and techniques available today to enhance and develop the child's natural resources, but there is still room for creativity by professionals and parents themselves who, with a positive and constructive attitude, become creators of products and strategies of effective intervention that are appreciated by children.
The active involvement of parents in education is a sign of vitality in the family and acceptance of the reality, different from a too lenient and protective acceptance of the child. In fact in such case, in the name of excessive protection and care in regards to the external world, the necessity for the child to acquire freedom and independence is not understood, and that is essential during youth and teenage life.
When planning these phases, one needs to know that the child's healthy relationship with his own body is of great importance, as are physical, sporting and leisure activities. Also, the contact with animals can help avoid many problems in relation with others as well as with self-esteem.
Health and school professionals become, in this regard, the basic references to children and families because they are in a position to share knowledge and practice they have gathered in the blindness field after years of experience and study, often in specialized institutions in which, incidentally, there is a risk to lose this patrimony of knowledge and experience because of a lack of continuity among professionals.
It is necessary that specialized training activities be offered to technicians and professionals so that knowledge transfer among professionals and particularly families is not improvised or done in a haphazard way. Unfortunately, it seems from what has been said, and also experienced by parents, that there is a decline in this professional sector and a lack of proper replacement for the generation of professionals trained in institutions for the blind.
This type of issue is linked to those discussed in the last series of meetings and was lead by representatives of public institutions and professional organizations: Aldo Costa, Giancarlo Marostica, Enzo Tioli, Pasquale Marino, Enrica Pietra Lenzi, Walter Baldassari, Mario Barbuto, Egidio Sosio.
The sometimes courageous and difficult initiatives that have been brought forth since the '70s, in order to guarantee equal dignity for persons with disabilities within school and society, have provided significant results and created general awareness of disability issues, which has even lead to some results at the legislative level with important laws such as law 104/92.
As time passes, it has been said that the motivation to update such laws has weakened and that there has been a climate where little attention and sensibility is given to those issues. It also seems that the administrative application of the legal dispositions is lacking and finding obstacles within the institutions themselves.
Projects and innovations have become rarer in school environment, there has been stronger requirements for savings on exclusively economic terms. Some of the structures, which were to take an interest in disability, have lost sense and active value. A certain detachment has occurred between institutions, with difficulties in integrating the various competence and maintaining a dialog and an efficient exchange of information. There are surveys but without control and significant effects. Some of the services offered, and supposedly guaranteed, are in fact partially accessible (Braille books) and volunteer organizations are making a distinction between themselves, which is certainly not contributing to the general interest.
Despite these observations, various participants have reported positive considerations, which makes it worthwhile to pursue what has been initiated. The legislative framework, however still incomplete, is rich and a source of guarantee. Some of the proposed organizations, among which the Istituto Francesco Cavazza, are restructuring and updating their services according to the new demands. Other organizations who have funding - like the Foundation which has supported Project C.I.F.R.A. - are keeping an interest in the field of disability. Bologna's ASL is working on a point of integration for resources on disability not with an objective of centralization, but of coordination and development of the different territorial realities. Parents themselves are growing aware of the role they can and should necessarily play and they have received attention from the Blind Italian Union at the local as well as the national level.
From these draft conclusions are emerging some lines of action for the future, which can be considered the result of a potentially richer development, stemming from the professional-parent discussions during the training course "To Free the Dream":
- promotion of training activities guaranteeing the presence of professional people adequately prepared to the needs of non-sighted children;
- creation of continuous opportunities for the different age stages of children in which to have physical and sporting activities, getting close to nature and animals;
- promotion of any initiative which requires and entices a better exchange of information, collaboration and integration between the various institutions and organizations working in the field of disability;
- activation of forms for mutual support and self-guardianship of families, also through the support of associations, in cases in which attribution of services is not done as it should be.