One of the things I both love and hate about life with autism is that it can be so wildly unpredictable. From one day to the next or even one minute to the next, things can change dramatically. Our day can go from being happy, fun & exciting to being hectic, difficult and even traumatic.
I love that we can get lost in moments and play whilst giggling our heads off, I love that I can get kiss after kiss and cuddle after cuddle, I love that there’s an innocence about J and he’s not bothered by life’s standard troubles, I love that he loves me and I’m the most important person in his world most of the time!
I don’t love that he can’t cope with certain noises or busy places, that he doesn’t manage well if he needs to sit still or stay on one place (this makes weddings and similar events very challenging for him and us), that he can’t tell us what’s upsetting him or communicate some of the things he wants or needs and I certainly don’t love that he can become so distressed by things that he works himself up and ends up being sick.
Life with any child can be unpredictable, hectic, dramatic or at the very least changeable. Life with autism adds more unpredictability and drama. Something J does ten times can be different the eleventh time. We can’t ever take it for granted that he has learned or will remember things. One example would be walking to the park. He could listen and stop at the road on ten separate occasions in a row. This doesn’t mean that on the eleventh occasion we can allow him to run on ahead and listen for the instruction to wait or remember to stop at the road. This means always being on guard, being prepared for anything to happen and always assuming that the instructions will be forgotten or won’t be followed. Always better to be safe than sorry. As my mum’s gran always said ‘the only peace is eternal vigilance.’
Is this a common thing for others? What strategies do you have for helping your child or coping with the lack of consistency?