I have often written about how I wished that Joshua had a big brother or sister to look out for him – someone on his side at school and to take care of him when we have gone. I would have like him to have had a sibling to protect him against bullies potentially and to defend him in the street when people stare. I heard an interesting feature on Radio 4 yesterday, as I had a long drive for work : two ladies spoke about what it was like to have had brothers with disabilities, who both died as teenagers.
They spoke with passion about their family experience and made me think about the perspective of the sibling, as I had never considered it before. As young girls, both had felt neglected by their parents as the needs of their disabled brothers always dominated family life, and there was a part of them that resented the attention that they received. They had become angry when their friends had made comments about their brothers who were not the same as them. Then as these big sisters had grown into teenagers, they had developed a desire to be the same as everyone else and to blend in, so then their brothers became a source of embarrassment to them, before they had the self-confidence to defend them. One lady was mortified now that she had disowned her brother in front of her friends. Then their brothers had both died in their teenage years and so the ladies felt guilt over how they had treated them and again, their parents were so absorbed by grief that they felt neglected again. They were promoting the need for counselling for siblings of children with special needs, to enable them to express how they were feeling.
It was a fascinating feature and it got me thinking about my idealised view of how Joshua and his imaginary big brother or sister might have been in reality. They would have found it hard in our family too to get attention, Joshua dominates most of our decisions and so it is hard to know how we would have found time for another child. I am not sure how families I know manage to make the ‘normal’ child feel important and to get their own time from parents, when the one , or even two, with special needs take priority. Joshua may not have a sibling, but he has his parents to himself, he does not have to share us and we can put his needs ahead of anyone else’s. I guess, like in most things, there would be both positives and negatives in any family dynamic and so we will focus on the positives and make the best of our family situation.