Disability in Childhood. From Theory to Practice

About the book:

The project to write this book emerged in the midst of the bewilderment caused by the lockdown decreed due to the Covid-19 pandemic. We are eight colleagues, friends and coworkers who decided to come together and create a group where we could reflect upon and open up discussions from within our common practice as professionals in the fields of Early Childhood Care and Development (ECCD) and Operational Psychomotor Education.

Each chapter tells a story that describes the therapeutic interventions that were implemented in the cases of families and children who presented genetic, neurological, developmental, cognitive and emotional disorders. With each story, we provide strategies and methodologies developed and theoretically founded on the basis of Developmental Neuropsychology.

What do we mean by “humanizing” interventions in cases of disability in childhood? What are the implications of taking into account the processes of subjectivation when caring for any child, and especially in the case of a developmental disorder? How can we provide assistance to enfeebled families in order to help them raise their children in an enjoyable, supportive and nurturing way? Can virtual meetings replace face-to-face therapy sessions?

These are some of the questions we are trying to answer. We wish to illustrate the paradigmatic changes that have occurred in the methodologies for approaching a case, abandoning the mechanistic conception aimed at stimulating and re-educating fragmented functions and approaching each child as a subject of law and agency.

Excerpt:

What makes this work original is its depiction of therapeutic interventions implemented in cases of children with developmental disorders. Our goal is to give an account of these practices, which are backed by a strong theoretical body of knowledge from different fields, but which have not been reflected in any written records that we know of when it comes to real teaching or clinical contexts. The existing bibliography delves into the multiple theoretical aspects of early development, but there is very little material regarding child therapy practices.

We work within the field of Early Childhood Care during the first three years of a child’s life, a discipline that builds on Dr. Emmi Pikler’s principles and findings on autonomous postural development. With regard to older children, our interventions are based on Operational Psychomotor Education, to which Bernard Aucouturier’s contributions on psychomotor practice are highly relevant.

From this complex point of view, the child is considered a subject of law and agency. In our practice, we prioritize the child’s exploration and free, spontaneous play, which we consider to be fundamental tools. In this way, we are promoting the child’s experience of agency, as well as the development of their own initiative and of their personal projects. All of this implies a chain of actions-hypotheses-questionings-confirmations without the external sanction of failure, error or the indication of a single way of achieving a certain goal.

We analyze the child’s competences instead of what they may lack, respecting the pace at which they mature. We seek to avoid being subjected to a predetermined fate based on the label of a diagnosis which can block the emergence of a singular subject. This is especially so in the case of the different types of disabilities, which are persistently categorized into standardized classifications (DSM).

Of course, these labels will mark a difference between these and other children. They are said to be “special” children. But who is not “special”? Who is not different from others? Perhaps our focus should be on the question of how it is that we (fail to) accept that difference. In general, that which is strange to us creates the urge to reject and to “normalize” so as to make everything uniform, so as to avoid feeling attacked or touched by that “strangeness,” by that “foreigner” among us.

The impact provoked by the birth of a child with a disability often “disables” the parents, preventing them from raising their child in an enjoyable, supportive and nurturing way. Therefore, the therapeutic work cannot dismiss the context of the family and the community in which the therapy is taking place.

The strategies for supporting the adults responsible for the child are fundamental. They pave the way for the promotion of the child’s subjective structuring and of their affective-emotional and cognitive development. That is why, tactically, we do not operate directly over their bodies. We seek to awaken a subtle and amazed way of looking at what the child is able to construct, think, imagine and say, which in turn will allow for the discovery of the child that lies underneath the pathology. It is fundamental to elaborate on the problem and to resignify it in order to strengthen the bond with the child instead of with their disability.

We formulate ideas and pose questions. The questions are varied and many, but this is necessary in the light of the complexity of approaching early development and its alterations.

To provide an example, we have transcribed the beginning of one of the chapters:

In Wonderland…

by Francis Rosemberg

“The only way to achieve the impossible is to believe that it is possible.”

                Alice in Wonderland, Lewis Carroll

This journey begins on a sunny April afternoon, at our office for Early Childhood Care and Development, Speech Therapy and Psychomotor Education, when we meet Patricia, Tomás’s mother. At the age of 2 years and 9 months, Tomás has been referred to us by his pediatrician due to a “language acquisition delay.”

The office is located on a second floor walk-up. When the bell rings, I go downstairs to open the door and, as we go upstairs, Patricia makes conversation and introduces herself.

Walking into the office means going directly into the Psychomotor Education room, so I tell her:

“This is where we’re going to work when Tomás comes.”

I show her the space, which does not have any furniture, but has a specific device:

“These colorful blocks are made of foam rubber. They are light so that the kids can build towers, houses or anything they may come up with. We have some mats, a ramp, and two different-height jumping benches right next to each other, in front of that big mirror. In this corner —I point to it— is the closet, where we keep the books and the elements for drawing and modeling, this small table with chairs, and a writing board…”

We go out into the narrow hallway and all the way to the desk where we will have our first interview.

What I do not know at the time is that, ever since the moment when we first walked up the stairs —which have become a part of the framework and already outline the dynamics of the beginning of our encounter—, a long path has begun which will develop over the course of six years and up to this day, which is when I have set myself out to write the story of this journey.

Six years is a very long time, especially in the case of a child who was not even three years old at its beginning. They contain a whole life story, not only for Tomás and his family, but also for myself. They represent the process of getting to know the child and his context, as well as the particular bond forged with him and his family circle.

To describe this process, I will resort to a few sessions, or fragments of them, in which there were relevant signs illustrating some meaningful moments. They will work as interesting representations for their subsequent analysis and reflection. Although they are presented in chronological order, they might jump ahead one week or several months. I will clarify this by indicating Tomás’s age in each case.

 

Translated by Sofía Yáñez / Edited by Marita Propato