Unnatural / institutional support for infants with very special needs & their families. What is it like in your locality (on a 13-point scale)?
‘there can be a prevalent medical/institutional hangover that we need to become aware of and address’
Extracts from Bringing up babies and young children who have very special needs:
“In the UK and some countries I know of, when a baby or young child has a multifaceted condition, the child, parents and other family members can get sucked into outdated processes that have no thought for their human rights or quality of life.
“These processes often have a strong medical flavour and are inappropriately modelled on procedures for curing a patient of any age who has some sort of short-term illness. In these institutional approaches, children are invalidated or downgraded by having very special needs. They can be thought inferior and not deserving of very much...
“In my view, we can see outdated support for babies and infants who have very special needs and their families... as a halfway point between institutional care and a sensitive respectful approach that fully recognising the rights of children and parents. My reasons for this strong view include the following:
- Parents are suddenly involved with agencies in processes they have not actively opted for over which they have no control.
- Parents and other adult family members can find themselves patronised, criticised and disempowered at a time when they are in crisis and needing sensitive support.
- Babies and infants can be subject to medical procedures that take little account of pain or levels of anxiety.
- When interventions are planned, there might be no thought given to child-parent bonds of attachment.
- Parent and child might have to travel to a variety of places for treatment sessions. While in some cases this might be unavoidable, in other cases it is to meet agencies' needs with no thought given to the family’s time pressures and tiredness.
- Attending appointments can be a drain on family finances because of travel, parking, eating out and child care.
- Appointments for these treatment sessions might not give any thought to the child’s comfort, quality of life or to their routines for feeding, sleeping and playing.
- Babies and infants can be parked on waiting lists so that ‘early’ intervention comes later and later.
- Practitioners give themselves importance they do not give to parents. While they want their own understanding and skills to be respected, they do not respect what parents know and do.
- New parents find themselves having to share their parenting role with practitioners in partnerships – as inferior partners.
- Support for babies and infants’ education can be offered primarily in clinical treatment sessions though the actual need is for a combined medical, educational and play approach.
- Babies and infants’ need for natural learning in everyday activities is given secondary importance to goals set by practitioners in their clinical environments.
- Parents can be asked to continue therapy at home in conditions that are not ideal and with the spoken or unspoken threat that not to do so will disadvantage the child.
“I am not suggesting any agency or practitioner wants to be cruel to children or parents, but there can be a prevalent medical/institutional hangover that we need to become aware of and address.
“When we see babies and young children who have very special needs as children with rights, we can ask ourselves if what we are doing is fair, respectful and appropriate. With this mindset we can explore how our interventions impact on parents, siblings, grandparents and other close family members.
“We can use rights and naturalness as essential measures of our work.” [Pages 84 to 86]
From Bringing up babies and young children who have very special needs: A 21st century guide for parents, students and new practitioners by Peter Limbrick. Sample pages here.
