My youngest daughter, and in fact my youngest child is 6. She has autism. She is verbal (oh God isn’t she verbal) but her processing, understanding and behaviour often make her seem more like a 2 or 3 year old. She has (as far as we can tell) no intellectual delays.
So, after a lengthy discussion on a forum this morning when I personally felt another mum was letting her autistic child get away with the proverbial murder when I would have been clamping down hard, how do we decide what is behaviour caused by the autistic mind and the way it works, and what is the child being a “little sod” as children are apt to do if they think they can get away with it?
There is no easy yardstick for measuring this one. Believe me, I know. After almost 18 years of parenting 5 children, and 2 of them on the spectrum, I have seen a LOT of behaviours. There are so many that are the same whether a child has additional needs or not; tiredness, hunger, boredom, fear, excitement, most of these produce the same kind of behaviours in all children, although I have noticed that my asd ones are definitely exaggerated in times of hunger.
But what of the seemingly innocent request to “take your pyjamas and put them on your bed please” On the face of it this is very reasonable. The logic dictates that leaving something where you would expect to find it next time you need it is to me overwhelming. Not so to M. I will point out that in order for complete clarity I shorten the request to “M, pyjamas on bed” not to be rude but so she is not confused by a sentence that she has to struggle to decode. But this seemingly innocent request can often set off a screaming fit, the ferocity of which appears to have no bearing on the task. Her next sibling up, B, who is 7, will happily throw his pjs in a corner anywhere given half a chance, but when I give him the same request he sighs (sometimes) and then runs up the stairs to do what he’s been asked. Simple.
There are days when I follow M up the stairs and ensure she has done this wee job, yes it takes me twice as long as doing it myself, but I think I am right to keep gently chipping away at her. One day I hope the penny will drop, and she will see that I am helping her to help herself. This is part of a long-term plan I have, which is to enable her to live independently if at all possible. I reason that if she starts small and builds on that, we will eventually build all these chores (for they are chores let’s be honest about it) into the fabric of everyday life so they become automatic and no longer cause stress at the mere thought.
But, and there is always a but, the wee small voice that calls to me so often at 3 am, asks me if I am in fact torturing my poor girl and perhaps I should cease being so cruel and give up the battle over pyjamas. Then I can spend the best part of an hour tossing and turning and beating myself up over the guilt that naturally follows such a thought. I finally tell myself I’ll deal with it later, drift back into a restless sleep, and the process starts all over in the morning. Fuelled by a disturbed night and lots of caffeine it again seems perfectly sane to insist on the pjs going upstairs to their rightful place.
Of course, I guess she could solve this dilemma by sleeping naked but neither of us has as yet suggested this option. I’ll let you know if it happens.