” and affected others”

Monday was a fine dry and sunny afternoon and when David and Helen returned from school I decided to take all of my children out to the park. Jen was making the tea and it would give her sometime to do this. So far so good? Well you might think so but this is how it played out. When we arrived at the park David and Helen got out, but Andy wouldn’t. We gave him a minute to think about it and process his thoughts – still no go. I suggested David and Helen go in to play for a while and I would drive round with Andy but Helen was not keen on this. She is only 6, I suppose. I tried to sit in the car with Andy and watch my other two but he became upset and pushed my hands towards the steering wheel indicating I must drive. I briefly ( very briefly) tried leaving Andy alone in the locked car , having some “down time,” but again this was a non-starter such was his anger. We all got back in the car. Helen was moaning at me because I said we could go to the park. David was giving Helen a hard time for not staying in the park with him. Andy was expressing his displeasure verbally about the interruption to his run I the car. Me? I was feeling like parent of the year. We drove across town with me trying to entertain David and Helen with jokes and funny voices while considering our next move. It was still a nice evening. We could still do something enjoyable as a family.
I drove up to a local beauty spot where Andy usually enjoys walking and exploring. David and Helen got out enthusiastically and wanted to walk around the loch, but once again Andy refused. We all got back in the car. I made a wide sweeping turn to allow Helen to see the swans and their cygnets. I wanted to spend quality time with my children enjoying and exploring. Educating them and talking to them about nature. More disappointment and guilt followed about another missed opportunity. You don’t get the time back you know. Mercifully I have little time to dwell on it as we engaged in the next issue. Andy has been stimming with a ribbon all day and had now put the rear window down and was trailing the ribbon in the wind. He was completely fixated and in his own world watching the ribbon flutter. Inevitably he lost his grip and off it went. More temper and frustration filled the car. I pulled in , checked it was safe and dispatched David to look for Andy’s treasured item. David brought it back to the car where it was snatched from him without thanks or acknowledgment. We tried one last play park on the way home with the same pattern emerging and so we returned home.
Siblings of children with disability put up with much disruption to their lives. In our case this includes sleep deprivation, lack of privacy and space, personal possessions being ruined, financial hardship, lack of opportunities for play and development, limitations to quality time with their parents, stigma of living with disability and daily disappointment as family life revolves around the need’s of their brother.
I’m sure it breaches their Human Rights while we at least still recognise such things in the UK . Surely siblings also deserve services and resources.
I.B.A.

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One thought on “” and affected others”

  1. You know what Duncan? You actually are ‘parent of the year’, and Jenny too. The efforts you make to be good parents are humbling and awe inspiring to the rest of us. Your children will grow up to be kind and considerate of others because that is what they see from their parents. But yes so much more should be done for the siblings of children with disability. Huge respect and love to you all.

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