Give me your hand, listen to my eyes, it is all I am saying

I built this project together with Dr. Claudia Guidi for the Association Amulet. The project was awarded by the national competition "Ideas for the motherhood", which financed it as a good practice of well-being and active parenthood. Through the activation of a support group led by dr. ssa Guidi (psychotherapist) the project is open to parents of disabled children with the purpose of sharing those affective and painful dimensions that otherwise are likely to remain in silent and stacked within the body.

From the narration of their stories, the group has developed the following objectives: 

• bring the inside out: from silence and solitude of the individual dimension to a common sharing, from the single group to other families and the whole citizenship
• to pour and share difficulties, loneliness, anxieties and emotions in a space "to be with ..."
• to foster intimate dialogue, emotional closeness in order to find new ways to face the diversity, the weight, the anxieties and fears
• to move from individual "incompetence" in dealing with the problem to a sustainable parenting experience
• to bring questions about what is "right / wrong" to do concerning how to ensure the chance to feel free and to be desired
• to open the doors to a "possible thinking"

The project is structured in seven group-work sessions aiming to develop a shared path from the pathological condition of the children to the future well-being, and to the promote free time mothers. The last session will take place at the Day Centre Association La Fonte in Sesto Fiorentino (FI), with the aim of seeing the concrete reality of social inclusion, housing and employment for disable persons.
Each session is devoted to investigate a specific theme that defines the title.

1st Meeting: the diagnosis and its relapse on the family

It all starts with the diagnosis: a traumatic time that can often be experienced as a "chasm" that cancels the coordinates of known directions, in favor of a state of utter helplessness and confusion, which engages parents in an endless "turn-round", in the desperate search for hopes to deny the response of illness. The session aims to help parents to support each other and share their pains, crating a time and space to process them.

2nd meeting: expressing similar experiences with different people

When facing the disability, the parents are blocked on questions that query their personal meaning of life: “why this happens?”, “what it is?”, “what will be?”. The loneliness experienced by parents arises questions on the everyday life of their children who grows further heightens the burden to bear. Through the group, and the narration of their stories, parents can break their isolation. The anxiety can be shared. The feeling of being part of a community in which we can recognize our identity, allows to deal with the sense of diversity, specially in relation with the wider social world.

3rd meeting : the relationship between mom and dad

The couple, as well as the relationships inside the family, are stressed to the test, with the serious risk of dissolving the family ties. Other times, especially during the process of adaptation, parents can find the needed resources to reorganize their family relationships safeguarding the well-being of each member of the family.

4th meeting: the parents speak of the brothers and sisters normal

Having a brother/sister with disabilities is an exceptional event, unexpected and unwanted that profoundly affects not only the relationship between the brothers, but also the psychological development of the brother/sister healthy. The ability of parents to accept full responsibility for the care of the disabled child helps the healthy brother/sisters to fulfill the most of their developmental tasks from lifting heavy burden to adhere to parental expectations of the lost ideal son.

5th meeting: the right to leisure

Mothers establish a very close relationship with the disabled child, in which they manage the necessary care in an exclusive way. Often this relationship is so tight that moms struggle to carve out their own spaces, allowing themselves to take on other roles in addition to motherhood. Representing oneself as an individual subject can be very difficult in the everyday life for mothers that deals with bringing up their children to therapy, takes care of them at home, takes them to the health facilities and through all bureaucracy. The leisure thus becomes not only a right but a duty in taking care of themselves.

6th meeting : is there a possible future of independency for us and for our children?

The first question that arises when a child with disabilities is born, or lately when it is discovered during its growth is "what will happen to him/her, what will happen to this person, when we will pass?" This drama accompanies the parents for the rest of their life. The problems usually explode after the age of mandatory education, when parents have to choose which path to follow: this time widens the gap between children with and without disabilities. Some have the ability to work and the person is enhanced. It is an opportunity for the disabled person to feel part of a social body, to grow in self-esteem, to not only focus on deficits, to perform useful actions to themselves and to others, benefiting in their training towards adult.

7th meeting : visiting a real possibility

There is a big difference between the idea of having a chance and the direct experience of such possibility. The last meeting will be held at the residential facility and daycare center run by the Association La Fonte in Sesto Fiorentino (FI). Parents will see the concrete reality of social inclusion, housing and employment for persons with disabilities. This study-visit will permit parents to open an inner space in which to growing the real chance of overcoming difficulties and openn to the future.

 

The project represents an important pilot experience: the materials and all evidences will be published on the website of Amulet association and on this blog in future posts, ensuring its transferability and dissemination.