This is another lyrical guest post by Dr. Luisella Magnani on the subject of pediatric delirium, specifically as it occurs in the preverbal child. She publishes her work on her website, Luisella Magnani » The PreverbalOncologicChild’s Delicate-and-Private World. She has gotten the attention of researchers with the Vanderbilt Delirium Group, ICU Delirium and Cognitive Impairment Study Group. She always dedicates her work to her nephew, Giampaolo, who died as an infant of cancer and who suffered from delirium. She is Professor at the College of science of Linguistic Mediation of Varese, disciplines General Linguistics; Researcher at Università Cattolica del Sacro Cuore of Milan, and Professor of Aesthetics at the Università Cattolica del Sacro Cuore in Brescia. She also teaches seminars monthly on delirium in preverbal children with cancer at the Pediatric Hospital. You can see her other posts on this blog under the Delirium title in the menu below the header. The websites for the artist Donald Zolan, the American painter of children, will likely not work properly. His website was under construction at the time this post was published. Many videos on Zolan’s art are available on YouTube. Of course, I could not duplicate her prose in the original calligraphy, but she has published it on her website at link Luisella Magnani » The Best Practice Of The PreverbalPediatricEmergenceDelirium Scale, PPED Scale. Many thanks, Luisella!–J. Amos
The Best Practice
The PreverbalPediatricEmergenceDelirium Scale, PPED Scale
In order to display the Best Practice of the PPED Scale, in the Non-Pharmacological-Care dimension, I begin with a sentence I live, because it is the soul, mind and body of this Scale, Being-in-the-Language You Say, in the Sign and Gesture You Shape, this is the In-Presence for the PreverbalOncologicChild. EveryPreverbalOncologicChild asks for in his private and deep silence, as well as in his private and deep cry. And, his asking for is always a urgent asking for.
The importance of time and space is so great. Because if on one hand, t i m e is a tissue which permits to analyse and classify deeply and clearly the inner nature, the inscape and the insight of the PreverbalChild, on the other hand, s p a c e is the context within which this tissue permits to be analysed and classified.
Seven are the steps of the PPED Scale, Cognitive Behaviour, Gestural Behaviour, Behavioural answer to the environment stimuli, Behaviour which threats the Child-Safety, Motor Behaviour, Dis-affective Behaviour, Vocal Behaviour. Being before the PreverbalChild approaching him sweetly and softly constantly. This way of being sweet and soft in words, signs and gestures m u s t b e constantly and substantially. That’s well appreciated by the PreverbalChild in pain, despite everything, everywhere, everywhen and everyhow, against everything, everywhere, everywhen and everyhow, Dysphoria, Fixed glance, Helpless glance, Frightful glance, Helpless-and-frightful glance, Hypomobility. In such a way, the Caregiver is creating his own personal and private atmosphere. The PreverbalChild perceives the Caregiver’s voice as air caressing his own face, air that his eyes are breathing and That is perceived by the Caregiver, when the Child looks at him and his eyes are saying to him: “ I thank You for having reached my private-and-intimate world. I was waiting for You. Now, I am no more alone, because I feel that I am understood.” Constancy and Substance in words, signs and gestures devoted to him. Constanceness-and-Substanceness in the Caregiver’s behaviour create what is new for the PreverbalChild. Constanceness-and-Substanceness create new time and new space for him. Being before a PreverbalChild in pain means to listen to the willingness to be within the inner scape of that Child, and his I n s c a p e asks to be considered, valued, cared, cradled and loved. His Inscape. Imagine, Imagine, Imagine the terrible distress, great pain, silent suffering of a PreverbalChild in Delirium. Imagine, Imagine, Imagine. Only when the Child feels understood, he feels shared in all his dimensions, despite everything. F e e l i n g u n d e r s t o o d (Claire Vallotton, 2008) is a great event, because the Child knows that he is not alone within his private pain. Atmosphere is very important, the environment is very important. But, the atmosphere and environment that the Caregiver succeeds in creating owing to
his behaviour is
the most important, because the magic of thinking, of speaking and acting creates in his inner scape the atmosphere of all the atmospheres and the environment of all the environments. All That He Perceives Fully.
The PreverbalChild’s behaviour asks for being analyzed deeply and deeply, second-by-second (Claire Vallotton, 2012), and that permits fully to analyze the communication owing to eyes, because he knows that eyes are the channel owing to which communicate, owing to which find the other from him. And, his eyes can portray disgust, dissmell, stress and distress, sadness, pain, solitude, anxiety, anguish, shame, fear, anger and rage (Paul C. Holinger, 2011). His eyes can contain these feelings s i m u l t a n e o u s l y. And, all together, they create a unit-of-wholeness. They dictate the behaviour of crying. And, imagine What-Is-Happening-Within-Himself. His perceptions, sensations, emotions, actions of thinking. Imagine, imagine, imagine. And when we realize that all these feelings are lived by the PreverbalChild in Pain we are entering his very private-and-intimate world. A very private world waiting to be discovered, cared, cradled and loved, second-by-second, because the real incidence of delirium in PreverbalChildren may be much higher than n o w observed in daily practice (Erwin Ista, 2012).
The individuality, the unicity, the subjectivity of EveryPreverbalChild in Pain |Mark, 7 months old – Nicholas, 13 months old – Thomas, 17 months old| I s the concrete tissue of his very private world, a world where his individual Cognitive Behaviour, Gestural Behaviour, Behavioural answer to the environment stimuli, Behaviour which threats the Child-Safety, Motor Behaviour, Dis-affective Behaviour, Vocal Behaviour are his mind-and-body’s answer to a context of high pharmacological care. ‘A minute of pain is an eternity for most children’ […] ‘Keeping pace with the Child’ (Leora Kuttner, 2010) means entering his mind-and-body space, living his emotions and perceptions totally and completely, observing him second-by-second, being before him in order to be within him and the PreverbalChild feels All That. This is his very private feeling. All That permits him to cope with what is happening in his mind-and-body. Firstly, the voice-atmosphere, the Caregiver’s voice,
my little-little-little heart, my little-little heart of my heart
invites the PreverbalChild to listen to a voice concentrated just on him. The same words are repeated, repeated more times, changing the rhythm of voice, changing the position of words,
my little-little-little heart,
my little-little heart
of my heart
you, my little-little-little heart, are my little heart of my heart
of my heart, my little-little-little heart, you are
And keep this sentence. Don’t forget it, because, this sentence asks for being repeated again and again, during the day long, during the night long. Repetition is the intensification of meaning. Sign-atmosphere and gesture-atmosphere fill the Child’s space and time. The rhythm you give to your voice is the same rhythm of your hands in movement. If he is crying you collect his crying with one of your hands as if you were collecting a bubble floating on air. Every sign and gesture must be cared in its sweetness and softness. A new atmosphere must be created for the PreverbalChild. New words, new signs, new gestures fascinate him and his indifference begins to be transformed into listening to different sounds, and he looks at different signs and gestures. Building atmospheres means to build that floating in–between (Gernot Böhme, 2001), where sounds of words, signs and gestures are between what is happening in his mind-and-body and his perceptions of all that.
Among ‘the preventive and interventional approaches used for delirium attempt to keep the healthy brain “awake” and decrease the further dysregulation of neurotransmission in the critical care setting’ (Heidi Smith et al., 2013), there is the painting-atmosphere, http://www.donaldzolan.com, http://www.donaldzolanvideo . Donald Zolan (1937-2009) was the American painter who painted the Innocence of Children. His paintings portray Children in very, very different contexts. And these paintings, above all videos of these paintings, fascinate a lot the PreverbalChildren, because they meet themselves in every painting, they meet other Children like them. And the painting-atmosphere ‘takes Children’ into the PreverbalChildren’s care setting room. They see new environments, new shapes and shades. And when the PreverbalChild’s attention is focused on a particular video, the same video is suggested again, intepreted to the Child, studied with the Child. Sounds, words, signs and gestures, images in moving create delicate
All that softly and sweetly, collecting every kind of behaviour coming from the PreverbalChild in Pain. His clapping the hand on his breast to say I am afraid invites the Caregiver to caress his clapping-hand, caress it again and again, blowing in it, on it, kissing it more times sweetly. The Caregiver’s behaviour shows to the PreverbalChild his willingness to understand him fully and deeply, as well as when he claps his clenched fist on his breast to say I am in pain. These are two very important gestures which state the PreverbalChild’s urgent calling for. Only observing his hand, and touching it, speaking to it, considering it with a very great interest, the PreverbalChild feels understood. These gestures tell us what is happening inside him. And when he feels that these gestures are considered and valued softly, sweetly and silently, a tuning-in process (Leora Kuttner, 2010) is created.
What is happening inside him when He throws on the floor his small dish full of food, He tears his hair out, He pulls out lines, He pulls out tubes, He beats himself, He scratches himself, millisecondly? This adverb of time is so important, it is introduced by Professor Paul C. Holinger in his recent writing, June 2013 Newsletter,
But note the rapid back-and-forth of the infant’s facial and bodily expressions of interest and enjoyment with moments of distress and fear. Recall that the expressions of these affectcs are very brief, i.e. milliseconds.
What a precious expression, milliseconds. An expression which is precious as well as conscious, concrete and delicate, because the content of consciousness (Heidi Smith et al., 2010) is disclosed, and that leads more and more to the inner and private space of the PreverbalChild’s bodily presence. The space of time, milliseconds, closes within it all the variables displayed in the PreverbalPediatricEmergenceDelirium Scale,
Communicate owing to eyes, turn-taking, joint-attention, indifference, the preverbalChild does not recognize his parents, solitude, dysphoria, euphoria, inattention, disorganization, dismiling, decreased consciousness, impaired memory, worsened concentration, thoughtful, context of gesture, context of sign, sequence of sign, frequence of sign, high frequence of sign, semantics of sign, variability of sign, new sign, unusual sign, rare sign, emotion-sign: clapping one hand on his breast to say I am afraid, action-gesture, sensitive-gesture, time-gesture, space-gesture, disorientation, hallucinations, tactile hallucination, sensitive hallucination, tasting hallucination, auditory hallucination, visual hallucination, olfactive hallucination, no-participation, no-observation, suspension, fixed glance, helpless glance, frightful glance, helpless and frightful glance, isolation, reduced mobility, reduced movement, changes in appetite, lethargy, he throws on the floor his small dish full of food, he tears his hair out, he pulls out lines, he pulls out tubes, he beats himself, he scratches himself, he beats his breast with his clenched fist, as a sign of pain, he beats with energy his hand on his breast, as a sign of fear, he turns- and-turns on himself and falls down, irritability in his movements, inconsolability of his cry: he screams, he yells, he cries out, disorganization in his movements, very quick movements, repeated movements intensively, hypermobility, hypomobility, slower-and-slower movements, he scratches his mother’s face, he bites his mother, he beats his clenched fist on his mother, glacial silence, inexpressive silence, inner silence, severity on his face, rage on his face, his lips draw a line, as perception of pain, his lips draw an O, as perception of pain, continuous moaning, inconsolability of cry, acute screams, continuous screams, he always repeats the same vowel as if he wants to throw it away, he always repeats the same babbling, as if he wants to throw it away. All these variables are behaviours and these behaviours are the results of feelings … We now can “see” feelings and understand how they work. (Paul C. Holinger, June 2013 Newsletter). And within the space of … “see” feelings, within the verb to see, we can find also the verb to taste feelings, to touch feelings, to smell feelings, to feel feelings, to hear feelings, and that happens when the Caregiver is the In-Presence before the PreverbalChild in pain.
Gernot Böhme studies atmospheres as totalities: atmospheres imbue everything, they tinge the whole of the world or a view | Donald Zolan’s Paintings|, they bathe everything in a certain light |the Power of Language, Signs and Gestures|, unify a diversity of impressions in a single emotive state|seeing Feelings, tasting them, feeling them, touching them, hearing them, smelling them|. … Can one really make atmospheres? The term making refers to the managing of material conditions, of things, apparatus, sound and light. But atmosphere itself is not a thing; it is rather a floating in–between, something between things and the perceiving subjects. The making of atmospheres is therefore confined to setting the conditions in which the atmosphere appears.
In conclusion, let’s read together what Gernot Böhme |born 1937, Dessau, Germany, German Philosopher| writes referring to The Space of Bodily Presence. It’s just within the words of this wonderful page that second-by-second I study that being-and-doing the best for EveryPreverbalChild in Pain,
The space of bodily presence is something deeply subjective … The space of bodily presence is the space within which we each experience our bodily existence: it is “being-here”, a place articulated absolutely within the indeterminate expanse of space – absolutely in the sense that it is without relation to anything else, especially to things: the “here” is implicit in the intuition of oneself … Bodily space is the manner in which I myself am here and am aware of what is other than me – that is it is the space of actions, moods and perceptions. As a space of actions, the space of my bodily presence comprises my scope for actions and movements. It might be called my sphaera activitatis. As such it is certainly also centred, and is articulated by characteristic physical directions such as above/below and right/left; but for the rest it is larger or smaller depending on the situation – for example, the presence of light or darkness. Bodily space as the space of actions is experienced essentially as possibility, as scope.
The space of moods is physical expanse, in so far as it involves me affectively. The space of moods is atmospheric space, that is, a certain mental or emotive tone permeating a particular environment, and it is also the atmosphere spreading spatially around me, in which I participate through my mood.
The space of perceptions is my being among things, that is, the way in which, through perceiving, I am outside myself; or it is expanse, insofar as my own presence is articulated through the presence of things.
… Although bodily space is always the space in which I am bodily present, it is at the same time the extension, or, better, the expanse of my presence itself. The space of moods is the space which, in a sense, attunes my mood, but at the same time it is the extendedness of my mood itself. The space of actions is the space in which I can act, but also the scope of my possibilities. The space of perceptions is the space in which I perceive something, but also the expansion of my involvement with things.
Imagine, if EveryPreverbalChild in Pain knew about all these studies and researches created Just for Him, That would be Already a therapy for Him, because in respecting boundaries, roles and responsibilities for specific disciplines, it is acknowledged that there are some aspects of competence in practice that transcend disciplines and would be expected of any practitioner working in the field of palliative care, irrespective of their professional field and role (Sheila Payne et al., 2013).
This study is in Memory of my Little Nephew, Giampaolo (5th March 2009 – 17th October 2010), whose Delirium was underrecognized, underestimated, understudied. To His Memory, in His Love, for all the PreverbalOncologicChildren in Italy, in Europe, in the World.
Sunday, 9th June 2013
Heidi Smith, Emily Brink, Catherine Fuchs, Wesley Ely, Pratik Pandharipande PEDIATRIC DELIRIUM MONITORING AND MANAGEMENT IN THE PEDIATRIC INTENSIVE CARE UNIT Pediatric Clinic North America Elsevier – Volume 60 Issue 3, June 2013 – Pages 741 -760
Heidi Smith, Catherine Fuchs, Pratik Pandharipande, Frederick Barr, Wesley Ely DELIRIUM: AN EMERGING FRONTIER IN MANAGEMENT OF CRITICALLY ILL CHILDREN, 2010 National Institutes of Heath
Paul C. Holinger DR. PAUL’S PLACE FOR PARENTS AND CHILDREN – JUNE 2013 NEWSLETTER
Paul C. Holinger TODDLERS, LANGUAGE, AND THE POWER OF TRANSLATION – GREAT KIDS, GREAT PARENTS – 2011 Psychology Today
Monique van Dijk, Hennie Knoester, Babette S. van Beusekom, Erwin Ista SCREENING PEDIATRIC DELIRIUM WITH AN ADAPTED VERSION OF SOPHIA OBSERVATION WITHDRAWAL SYMPTOMS SCALE (SOS), 2012 Springer Intensive Care Medicine
Claudia Gamondi, Philip Larkin and Sheila Payne CORE COMPETENCIES IN PALLIATIVE CARE: AN EAPC WHITE PAPER ON PALLIATIVE CARE EDUCATION – PART 1, PART 2, 2013 European Journal of Palliative Care
Leora Kuttner A CHILD IN PAIN, 2010 Crown House Publishing Limited
Claire Vallotton INFANT SIGNS AS INTERVENTION? PROMOTING SYMBOLIC GESTURES FOR PREVERBAL CHILDREN IN LOW-INCOME FAMILIES SUPPORTS RESPONSIVE PARENT-CHILD RELATIONSHIPS 2012 Elsevier
Claire Vallotton SIGNS OF EMOTION: WHAT CAN PREVERBAL CHILDREN “SAY” ABOUT INTERNAL STATES? 2008 Michigan Association for Infant Mental Health
Gernot Böhme AISTHETIC. VORLESUNGEN UBER ASTHETIK ALS ALLGEMEINE WAHRNEHMUNGSLEHRE, 2001 Wilhelm Fink Verlag, München