Monday, 05 March 2012
One of the biggest difficulties of life with an autistic child is the frequency with which, as a parent, you get it wrong. As his dad, I should be the one who knows how to handle my son’s needs and respond to situations we find ourselves in. Yet frequently I find myself handling a situation in the wrong way or letting things happen that should not. It’s not that I’m a bad parent; I think I’m a normalparent, but as I’ve said in the past, normal rules do not apply.
This was brought into sharp focus over Christmas, when we had a small family gathering at my parent’s house. We had kept this year’s holiday plans simple and low-key, avoiding the usual house full on Christmas day and staying put in the bunker of our home. It was great. B was great. You have to leave eventually though. We armed ourselves with some of the games and toys that had been the biggest hits over Christmas and went to spend the day with parents and grandparents. B was not badly behaved- he knows his nanny and grandad’s house well and is happy and comfortable there. It was remarked that ‘you don’t know you’ve got him’ more than once. Sounds great, right? But on this occasion, B’s lack of bad behaviour (I hate that phrase- so inappropriate) was, for me, the problem.
My son did what he always does at his grandparents and headed straight upstairs to find their dvd collection. Once upon a time this was located downstairs but B was so obsessed with messing with them that they got shut away in the spare room upstairs. Not that this makes any difference. Now he just goes to that room and looks at them. Like us, my parent’s have relaxed about things like this- discs will get scratched from time to time but it’s no big deal. Looking at them makes him happy, so why not let him? My dad also got out, downstairs, a portable dvd player. B was in heaven. He would select a disc, bring it downstairs and perform a little ritual involving playing, stimming and running off (but not watching them). This sounds harmless enough, until you reflect on the fact that he proceeded to do this, without deviation, repeatedly for the whole five hours we were there.
Five hours! No food, no engagement with anyone or anything other than the dvds and player. And we let him. I let him zone out completely and sat back and watched him in his rapturous, repetitive state. I might have tried to engage him once or twice, to no effect, but mostly I just let it happen. I feel guilty about this now. Repetitive behaviour like this can’t be good for his development and I should have intervened. Drawing him away from it would have presented problems and possibly led to a tantrum but would have least broken this pattern of obsessive, compulsive behaviour. Instead I took the easy option. I sat on my arse and had an easy day.
This is a good example of how I often get it wrong. Too often I choose the easy option and let him indulge rigid, repetitive behaviours that pull him further and further into his own isolated world, instead of pulling him back into the social world. I should not be doing this. I should be sat with him, having ‘floor time’ or using a strategy from one of the countless books I’ve read. This boy needs me to engage him and provide variety and stimulus and activities. He can’t, unlike his brother, find them for himself. I should not let it happen around me or make excuses or be too busy doing other stuff. I shouldn’t just let him get on with it. It’s very easy to feel guilty about the amount of time and attention you provide for an autistic child.
This is just one example of how I often get it wrong with B. Some mistakes you just never learn from. A couple of times recently I have told B we were going out in the car. He likes this, but of course then thinks we are going immediately, when often I’m giving him advance notice. Cue distress. I continue to think volume will get through to my child when I’m repeatedly calling him. I continue to use the word ‘no’, even though it’s usually the cause of distress and argument with my son. The house remains littered with things he can’t have but can see, and therefore wants.
I shouted at him today. I forgot the ‘not won’t/can’t ‘ rule. I forgot that shouting makes bugger all difference. I punished my child- for being autistic- by scaring him. I sometimes feel like the entire day is made up of a series of crap-parenting traps that I continuously step into. I tread heavily on the eggshells sometimes.
I know I get it wrong all the time and that there’s so much more I could do. I also know that I need to stop typing about it and do something. I wanted to write this post though, for anyone who ever feels like a crap parent to their autistic child. If you do feel that way, I want you to know you are not on your own. In the books I’ve read on autism I’m often presented with people who have dealt effectively with their child’s condition, or who have wise and effective words about how they deal with things. This is all very well and good (and sells books) but is not always a reflection of what we’re going through as a family. Where are the books that tell you it’s normal to feel like a shit parent? I can’t find those books and I sometimes want to read that it’s not just me.
Perhaps by sharing such experiences, we’ll stop beating ourselves up about it.
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