Well, I phoned a mum and asked whether talking to me had helped. She was polite but rather non-committal so I guess it wasnt a whole lot of help. I think it was largely because she didn’t adhere strictly to the behaviour schedule, but I had clearly failed to impress on her how important it is… And then to give her alternatives when she felt something wasn’t working.
You may recall that a number of us went on a course run by the charity Sibs which is all about supporting the siblings of children with disabilities. The thinking is that the sibling relationship is usually the longest relationship anyone has – you may have seen articles about brothers being reunited after sixty years and feeling wonderful. I remember my baby sister when she was less than a day old and that gives me some ownership, a peculiar relationship etc etc. Siblings are born into a family where they may have to compete for attention from adults [if not parents, grandparents], they are acknowledged as x’s sister or brother, look similar or, strangely, do not etc. So the sibling relationship is very important. And if one sibling has especial needs, the relationship is distorted.
It requires the tolerance of a saint to always be the second to be considered on trips, at special teas, etc. Will x behave well, enjoy, stay awake? who cares what the others want!!! It requires the talents of Solomon to be able to see the needs of all your children and to meet them fairly. Often, the parents can see that there might be a problem but lack the physical time to meet everyone’s needs.
Sibs advocates giving the sibs of children with disabilities a forum where they can have fun and moan about brothers and sisters with others who understand. It costs money but saves even more as children from families with disabilities can be very needy later – they may develop anxieties and depression, they may under-achieve, they may find it difficult to establish families of their own.
Following the course, colleagues in other towns were able to establish courses and the children who attend value them enormously. We couldn’t and it is a loss.
In an ideal world, there would be a weekly youth club which was available and children dipped in and out as they felt the need. There would be time for teachers to talk to children who needed to talk to them, there would be places to go. There is a lot of guilt associated with disabled children – for parents and for siblings, often for the disabled child himself. We need to give this more consideration.
p.s. did you read the research this morning that says we consistently underestimate the height of th eyoungest child in our family – and only the youngest. We are accurate for the rest. They suggest it is to ensure that we continue to nurture the youngest in a way that might feel unecessary if you were realistic about how big they are.