The following is an extract from a keynote address given by Dr Patricia Champion at the IMHAANZ Conference (Infant Mental Health Association Aotearoa New Zealand), October 2022.
"For parents and caregivers. I want to say that what matters to you is the most important thing. I can and will share with you how my knowledge base informs me, and together we will work out how best to support you as you parent your child"
There are many reasons why an infant or young child may develop differently. For some, the nature of the difference and accompanying developmental challenge may be known early, for example prenatally.
These would include abnormalities of growth of the fetus, heart, lungs, gut, limbs, brain. Such in utero presentations may or may not be related to genetic differences, may be mild or severe, and may not always be known before birth.
Parents of these children must traverse a huge new territory of information, personal grief and loss, and very often enormous fear and ever present anxiety around infant fragility and medical crises. A dad recently expressed it this way to me:
“You think you have fallen off a cliff into a void of the unknown—a black hole, no hope, just a bad dream from which you will wake and the diagnosis will be gone.”
Returning again to the reason for difference—for some babies and little children this may be a gradual, or sometimes sudden failure to meet established developmental milestones. These may be physical, for example low muscle tone, heightened muscle tone, sensory, vision, hearing, failure to thrive, difficulty with feeding, sucking, swallowing, pain, regurgitation, digesting.
Or it may be difficulties with the development of self-regulation, despite a responsive caregiver relationship—manifested in excessive crying, difficulty accepting soothing and comforting, poor sleep/wake cycles. All of the above may occur as a single presentation, or be present as part of what presents as developmental difference, with or without an identified diagnosis.
So what do we need to understand and pay close clinical attention to, as we offer developmental assessment and targeted support with a framework of developmental science? First of all, infant/parent brain/body processes and influences cannot and should not be seen other than as an integrated dynamic whole, with both positive and negative causal pathways. This is the origin of the all-important ‘social engagement system’.
The Harvard Centre of Development puts it this way:
“The environments we create and the experiences we provide for young children and their families affect not just the developing brain, but also many other physiological systems, from cardiovascular function and immune responsiveness to metabolic regulation. All these systems are responsible for lifelong health and wellbeing.”
So it matters, and never more importantly than when development is compromised.
There is in my mind a very important first step in early infant development. It occurs in typical development in the first 3 or so months—it is the ‘interpersonal world’ and it is where all the fundamental processes of being human, engaging in the social world, of trust in the responsiveness and nurture from another, of learning to calm and self-regulate. These are fundamental psychobiological processes which may not be happening easily for differently developing infants. This is the period when an infant may show you what their body/brain is struggling with.
Of fundamental importance in all early human behaviour is the rhythm and pattern of early motor actions not yet obviously directed to an end goal, but responsive to caregiver attachment. Do the legs and arms kick evenly and rhythmically, does skin colour increase and eyes open wide when spoken to in ‘motherese’? These behaviours are the building blocks of communication, way before speech.
Here we need to look carefully at what the contributions may be—social, physical, parental, cognitive, language, genetic etc.—and hypothesise what the driver or drivers of the presentation may be. We need to plan an intervention to support, scaffold and resource developmental progress and re-evaluate. This will require multidisciplinary professionals working closely together, each with an understanding of the nature of early biological/behavioural processes and neurodevelopment.
What is essential in my view is an integrated interdisciplinary team approach where there is a common understanding that all development is hierarchical, interrelated and contextual. One should always act preventatively where possible, so that awareness of risk factors, whether they are genetic, premature birth, cerebral palsy, ASD, non-accidental injury, or illness, can be understood as a developmental context-driven pathway, where earlier and important brain development underlies both positively and negatively what flows from that.
Working with difference is a real partnership with parents where they, the parents, are the expert on their child. They are the microsystem from which we know brain-to-brain relationship connections build learning and connection and where all must be safe.
Within shared trust, we bring our knowledge and clinical experience to each individual situation—for example different temperaments, family characteristics, personal histories, belief systems and priorities. Remember always, a diagnosis does not define a child. Acceptance and adjustment may be a long time coming; staying the distance with families is key to outcome.
So to conclude—what do I think matters? Actually, it all matters.
When I was a new and younger clinician and was regularly called to the maternity ward following the birth of a baby who was identified as unexpectedly different, and was confronted there by overwhelming grief, anger, guilt, unstoppable weeping, distraught relatives, and back then, dismayed clinicians or often cold interactions and stark information—I used to think that there must be something I could or should do so as not to feel helpless in the face of their distress.
But it seems that in talking with parents much later, that was not so. Instead, they just wanted my personal presence and support and kindness—not lots of words. And additionally, it was important to them that I held and stroked their baby. They said it made it seem hopeful, if I, the clinician, could touch their different baby.
Meeting many parents by chance over the years since, it is humbling to think that they remember in fine detail that experience and what I said or did—such was their heightened state of arousal at that crisis time.
And finally—for parents and caregivers—I would want to say that what matters to you is the most important thing. I can and will share with you how my knowledge base informs me, and together we will work out how best to support you as you parent your child or your children.
Clinically this should be a ‘connected space’ where complex narratives occur and where the challenges of disability for the child and the vulnerabilities and strengths of parents need to be held, respected and enabled. As it is with you that your baby or little child has both the biological and the emotional connections, and it is with you that they will go on to live their best life.
It is here that we have, I think, two choices—a wise clinician put it this way:
“We can carry our skills on a tray before us, thus leaving a gap in the connected space, or we can carry them behind our backs, bring them out when needed and therefore leave the human connections at the centre and at the forefront.”
