Optimizing the lived experience of children with disabilities: The therapist's role

Abstract

Caregivers universally try to give infants the support they need until they are able to ‘do it myself’, whatever the task or activity. But with the lack of availability of robust references and models, many parents of a child with disability are keen to receive guidance on how to achieve this effectively with whatever supports are available. To meet those children's and parents' needs, health professionals must have knowledge of many areas, including all aspects of development (e.g. not just motor development) across the lifespan, a comprehensive framework (such as the ICF and family-centred care), basic psychology, and how to apply this knowledge to individual situations.

For that purpose, child development can be understood as a complex, non-linear system with the emergent properties being the child's activity and participation. These emerge over time as the child is provided with opportunities to explore their environment, driven by the development of their sensory, motor cognitive, and behavioural systems, their changing morphology, the growth of neural and musculoskeletal structures, as well as social demands. Opportunity for experience is thus critical in shaping each child's development. This highlights the importance of providing plenteous opportunities, particularly for the child with developmental challenges.

Is there a role for the use of therapeutic handling to provide these experiences in order to guide a child's development? There has been much discussion in this journal about this vexed question. Many therapists currently would use some form of ‘hands-on’ approach, also referred to as scaffolding. But this should be kept at a minimum and only be applied if there is potential for the child's own learning to initiate the activity for themselves, to enable the child to ‘do it myself’, or to use equipment more effectively.^{1, 2} If continual hands-on guidance is used, it is inappropriate and should be discontinued.

Therapists with a good understanding of the non-linearity of child development can estimate the potential for optimizing the lived experience of children with participation restrictions. They can apply knowledge of muscle physiology, biomechanics, and neuroplasticity to know when a child has the potential to do an activity more easily.^{3, 4} Providing biomechanical advantage using minimal hands-on support to elongate stiff/tight muscles provides a basis for more efficient muscle activation through a fuller range, or to assist initiation in a cognitively impaired child to promote engagement with a task. In both cases this can lead to an expanded repertoire of skills. The parents are coached to engage in these modified tasks at home in play activities to enable the necessary practice to drive neuroplasticity and muscle growth to lead the child into future developmental activities. With their in-depth knowledge of child development, as well as muscle and neural development, therapists have a responsibility to ensure optimal developmental outcome by hands-on for hands-off self-initiated activity only when appropriate. But definitely not so-called normalization with a continued hands-on approach and restriction of developmental activities because they are deemed not typical.

How do we present this idea to parents/caregivers? Rather than suggesting that ‘… the child is not good enough as they are and needs to be improved’,⁵ it is helpful to discuss the possibility of an alternative way of achieving a task, when possible, which caregivers can encourage in daily life activities and guide the child's development to be the best that it can be now and in the future. This involves an in-depth understanding of the complexity of child development – the hows and whys. This knowledge forms the essential building blocks of each stage of development for the future, in the essential context of the child and their family. The families look to the therapists for a collaborative relationship in which the therapist supports the family goals and ensures that they focus on optimality and not normality.