It is such a massive struggle because the general public is not aware or concerned
The words I am using:
'Significant challenges to development and learning'.
This avoids the word ‘disability’ which I feel is unjustifiably negative about the new child’s present and future. Another common phrase, probably from the medical world, is 'disability and developmental delay'.
'Oppressed minority group'.
These families are a minority group in all countries.
Families suffer prejudice and discrimination, have to struggle to survive with inadequate resources, are financially impoverished, socially isolated and typically sleep deprived. Family members’ mental health and the new child’s bonds of attachment are put at risk. Study, work and careers are interrupted or terminated.
All of this impacts negatively on all children in the family.
'Effective support systems'.
This is a shortened version of ‘effective integrated early child and family support systems’. ‘Early childhood intervention’ is the traditional term but I feel it is too medical and authoritarian.
‘Effective’ means each family feels they are being helped in the ways they want to be helped at the time they need it and the child’s attachment, development and learning are all maximised (for want of a better word).
‘Integrated’ means local services (health, education, social care and other local agencies) work intelligently together to prevent fragmentation of support to the family and to avoid treating the child in separate bits.
A fair ‘system’ provides effective help to all families in the city, region or country that want it.
For many decades, the world has been developing ‘early childhood intervention (ECI)’ programmes within which very many committed people have achieved great things but it is only scratching the surface leaving the needs of this oppressed group very largely unmet.
We have two worlds:
- the smaller one comprises families whose baby or infant has significant challenges to development and learning together with the people who know their needs and are trying to help
- the other is the world at large in which the general public is not aware or concerned – or just does not give a damn.
Between the two worlds is a one-way door. When people from the world at large discover their new child has significant challenges to development and learning they enter the smaller world and are surprised to find how bad it is, surprised to find themselves suddenly part of a severely oppressed minority.
They generally do not go back into the bigger world because they have transcended it with their new experience, knowledge, wisdom and humanity.
Peter Limbrick, September 2021
To be continued. Your comments welcome. Post this into your social media if you wish.