To Free the Dream

This is about a series of conferences requested by a group of parents of children with important visual impairment. The project has gone from a simple to significant journey for families who are dealing with issues relating to raising a disabled child.

Pier Michele Borra

On the 11th of October 2003 at 3:30 p.m., in the Quartiere Santo Stefano of Bologna, took place the first of 10 meetings planned for the journey to free the dream. The family is the first true resource to encourage in the integration process of a disabled person. This project was made possible thanks to parents, who have expressed their own needs and organized themselves, to the Italian Blind Union, the Istituto Francesco Cavazza of Bologna, and funding from Project C.I.F.R.A. of the CARISBO Foundation. The Quartiere Santo Stefano of the City of Bologna has supported this project by making rooms available for conferences.

Out of a window, a kite flying high in the sky. The logo was taken from a drawing by a parent, and it best represents the common dream of a group of families, which had gotten acquainted and decided to see each other to talk about their experience, putting in common and structuring their needs as well as those of their children.
Created a year ago, the committee has the objective of bringing together parents of children with a visual impairment, and representing them in associations and organizations active at the national and international levels, through stimulating and inspiring activities that have the objective of developing full potentials for a complete integration into society. Discussions on personal experience have brought forth the importance of family and parents that, from the very first moments, represent the emotional, relational and practical support when having a disabled child. No parents are in fact prepared to face diversity and the substantial changes necessary to adapt the idea we initially all have of parenthood. The support is therefore important in order to overcome the feeling of material and psychological instability, and to strengthen the fact that parents themselves will be the main actors, however supported and helped, in the integration of their own children into society.

From these assumptions and common experiences, the group of parents has established the ideal path, beginning at the birth of a disabled child, and on through the various phases (social, educational and relational) that the family experiences daily while interacting with institutions, agencies, and associations in the area. Area that is very often, out of necessity, extended beyond the city of residency, to any place where service centres are able to guarantee answers and solutions to problems.
The focal point of the first three meetings is the family, the couple's relationship, the relation with the disabled child, and more extensively, the relation with the external world. These are the first phases, important because everything that happens is crucial, and will shape the future. These are times where mistakes are easily made, where ignorance can lead the way, and where wrong choices can irreparably influence the future. This is a period in which a family will have major needs for psychological and clinical support. The family needs to know about the best available competence, to learn the meaning of disability and what it holds for the future. When necessary, the family needs to know who the actors are, and who can provide help and assistance.

The next three meetings deal with education and the autonomy of children with disabilities. In particular, visual disability is discussed as well as multi-disability from the educational and cognitive point of view, as well as autonomy within the family and society. Parents need to know about the instruments, necessarily different, that will help and guide them when addressing the development of their growing child. Let's point out in these discussions, the importance of the relationship between the disabled child's body and the world of play. The subject is introduced in the discussion of a three-year study about corporeity and psychometry in a group of children who have either low vision, who are blind, or are sighted.

The next two meetings deal with legal aspects. The two conferences on legal issues begin with public institutions that work in the interest of disabled children and their families. The following subject is delicate and problematic: the relationship with family and school. This central aspect of education, which must involve the whole family, is often a difficult path, often presenting painful and frustrating obstacles. In fact, the resources available to define the best adapted educational model for children are considerable and do not always generate expected results. It requires in depth knowledge in order to successfully coordinate services by actors working in the educational field, and experts. The role of parents is central. They have to play a predominant and inescapable part in this, or risk the failure of the integration project of their disabled child. The following meeting deals with school legislation, rights and obligations of parents of blind and multi-disabled children. It is directly linked with the previously mentioned educational model, supporting it in terms of resources and specialized means of education and autonomy, which are provided by institutions.

The series of conferences concludes with presentations by associations which provide support to persons with disabilities. The first relates to disabilities in general, and the other is specific to visual disabilities. For a parent, it may seem basic, but it is unfortunately an aspect still difficult to understand and often complex. The associative world is in fact quite fragmented and it is difficult to understand who does what, what services are provided, and what choices should be made in order to offer what is best adapted to children themselves and their parents.

Guest speakers are professionally active at the national level and possess significant competence and work experience relating to the subjects that are discussed. The project concludes with a document in which families write about their experience and elements of discussions during the series of conferences. The objective is to define a path in which problems will be dealt with and overcome. It deals with the delusions and frustrations involved with raising a disabled child, with the objective of promoting efficient and dignified integration of the children themselves, as well as a confident integration of the family into society.