Covid 19 - The Forgotten Families?

We have written previously about the impact of Covid 19 upon many of those in education who have CVIs. We have reported the benefits of learning at home during Covid 19 (familiar, calmer, clutter free learning environments) and the negatives (usually concerning inaccessible materials and lengthy periods of screen time), reported by families of young people with CVIs.

However, we have become increasingly concerned about the experiences of families whose children, have CVIs and profound disabilities.

Whilst many may still be in school as part of a 'vulnerable group' this is not always the case, for several reasons.
For those who are in school, those supporting them may not be the people they are used to, who may be ill, self-isolating or co-opted to other tasks. Even when they have support from familiar staff, their regular class routines may not exist, therapies may no longer be taking place, especially if external personnel are involved in carrying them out. Thus, they have moved from the 'known and familiar' to the frightening 'unknown', however well-intentioned and necessary any new arrangements may be.

We know that the familiar and routine is particularly important for such young people with CVIs, we know that the ensuing confusion and fear such changes may have engendered, will not only have an impact on the young person's behaviour in school, but also at home, just as it does for all children and young people with CVIs. However, we are in unprecedented times - families are under incredible strain, many worried about employment, the majority caring for other children, possibly worried about elderly relatives and so the list goes on.

And for these young people who may not be able to attend school for various reasons. What support are their families getting? Many may be working from home, managing other children and their online learning, if they have the technology available to do so or juggling online sessions so that others are able to try and keep up with schoolwork. They may also have limited space or quiet areas at home. All this alongside caring for a child with CVIs and profound disability and worrying about keeping them, alongside their other children, safe and happy.

Due to these stressful situations, this child's world has imploded, whether in school or not, they no longer benefit from the familiar, comforting safe routines with people they 'knew' pre Covid 19. For these children who may be being sent work at home, are expectations realistic? What is the nature of 'virtual' work for a young person with CVIs and profound disabilities, how has it being made truly meaningful and even if so, what is being expected of families in order that they carry it out, whilst managing all the other demands on their time and energy?

Let us not forget the teachers of children with CVIs and profound disabilities who are dealing with the situation of trying to provide a realistic, meaningful distance education for these children, coupled with the worry about how their families may be coping with all the extra stress. These are children who require a huge amount of 1:1 support and care whether at school or home. During Covid 19 their families may also be supporting other children, worrying about their job, trying to work at home as well as managing a child's complex medical needs, which may need close monitoring, alongside carrying out extra personal care tasks.

In these situations, we need to step back and keep at the forefront of our minds the pressure that many families and teachers are under and not be drawn into 'box ticking' exercises which may heap more stress upon them all, at a time when they most need positive support. Families should not feel that they are not meeting often impossible, unrealistic demands which may be being placed upon them (and many of their child's teachers), especially when for these children, 'virtual' learning is not the way they learn and thrive, even without 'The Covid 19 Effect'.

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