Sharon (mother of 2 children, including 1 autistic child): Day-to-day life is very well planned, umm, very well structured. You get the odd spanner in the works, and that throws anybody out, but I think that if you can plan as much as possible, using visual supports, is crucial. We have visual strips, with PECS pictures and so on, that we use. We also use the iPad. We got Peter an iPad and so, we use social stories to help that process. There’s a great app called Going Places, that talks about going to the doctor, going to school, going to the hairdresser, going shopping, all those kinds of things. Ready made-up social stories that you can give your own overlay, your own look and feel. Umm, so in terms of planning, understanding the schedule, giving him a breakdown of activities, making sure everything is highly structured and planned, umm, just giving him a roadmap of what his day is going to look like.
Bobby (father of 2 children, including 1 autistic child): So it’s more sort of prepping him up for the day’s events or what’s going to happen. Because what we’ve noticed recently is that if we don’t plan his day and tell him what’s the next steps, he becomes a bit disorientated and not really sure what he wants to do, or where he wants to go.
Marie (mother of 2 children, including 1 autistic child): He needs constant prompting, and he has little signs all over his room to remind him what to do next. If anything’s not as it was the morning before, and the morning before… so, say his uniform’s not in exactly the same place as it was the previous morning, he’ll run out and say to me ‘I can’t find my uniform. Where’s my uniform?’ You know, that kind of thing.
Alison (mother of 2 children, including 1 with Asperger’s): His executive functioning is very limited so he has no responsibility for things himself. He can’t get himself organised. So he has to rely on us to do everything. So we have to get him up, wake him up in the morning; he has to do everything in the same order, even if it isn’t practical, he must do everything in exactly the same order. Otherwise he gets confused and he doesn’t know what to do next. So we get him up, he comes and has his breakfast, then you’ve got to be on top of him to make sure he’s had his meds, then get him into the shower. And if you left him, he would just stay in the shower. And he could tell you, word for word, how we should shower ourselves, but he’ll just stand in the water, and just stand there. For twenty minutes, half an hour, if you let him. Umm, gets out, wraps himself in a towel, lies on the floor and goes to sleep. If we were to leave him. So we have to get his clothes, make sure that he’s… prompting him constantly: ‘What do you need to do now? What’s next?’
Joanne (mother of 4 children, including 2 autistic children): As they’re winding up breakfast, and Mum will be packing lunches, we might have a little bit of resistance from Flynn, because he goes through these moments of ‘Oh, I don’t think I want to go to school today.’ So Mum might have to chase him round the house a couple of times just to make sure he does get dressed. Whereas Xalie, very compliant Xalie, will always come when I call and get dressed when I call – which I’ve always found interesting, because though he’s the higher functioning, she’s the more compliant: ‘This is my routine, I get dressed, I have my breakfast, this is how it is. If I don’t complain it’ll all go as it should.’ Whereas he’ll decide one day, ‘I don’t feel like going today, so I might make Mum chase me round the house before I get dressed.’ So that’s the difference of having two children on different levels of the spectrum.
Marita (mother of 2 autistic children): It takes us two hours to get ready for school in the morning. And we live five minutes’ drive away. At about two o’clock, I get afternoon tea ready. I try and have quiet space for the girls to decompress after school. Make sure that they can go and watch TV if they need to, or there’s somewhere quiet to play. And just, because… it takes me about an hour to get all that ready, getting everything ready for after school. But if I don’t spend the hour getting everything ready for after school, then we have three or four hours of one or both of them screaming because they’re so stressed, and they haven’t had anything to eat, because I haven’t prepared the snack, or they haven’t been able to come home and just sit down and watch ‘Sailor Moon’ for an hour. So I sort of go, well I’ve spent an hour of my time getting the place ready for them, but I’ve saved my sanity for four hours of screaming.
Jane (mother of 2 children, including 1 with Asperger’s): Some days can be really, really difficult. Even at six o’clock in the morning you can feel like you’ve already been running a gauntlet for the last two hours because he’s woken up early and he’s had a bad dream. And if he has a bad dream, he doesn’t want to share it with you, but he wants me to stay with him and he wants me to try and get the bad thoughts out of his head. Some days are easy and it’s not an issue, and then other days it’s just, like, one spot fire after another.
Marita: The beginning of the week is always better than the end of the week. And probably the first half of the school term is always easier than the second half.
Bobby: What we’ve actually noticed is that if he doesn’t have a good decent sleep, then it becomes a bit more difficult. However if he has a good sleep and wakes up in the morning, and everything’s the way it’s structured for him to do – he gets up, goes to the toilet, gets dressed, has breakfast, brushes his teeth – then he becomes more of an actual child that just goes along with it and knows what the next steps are.
Marie: I just try and be incredibly organised, but other people come into the equation and life just isn’t always like that. You know, so I can try and be as organised as possible, and have things ready at exactly the same time every day, so: have the same breakfast ready at the same time, his clothes in the same place and the bathroom available for him to use at exactly the same time as other mornings. But if that doesn’t work, he panics.
Rachel (mother of 4 children, including 3 autistic children): One thing I did notice, when we first started noticing differences in Dominic, was that rigidness in needing things the same. If I drove a different way somewhere, even before he was verbal, he would cry. And then I sort of figured OK when I do things differently, he can’t cope with that. So, I’m going to do things differently all the time, so he needs to learn to cope. Not to be mean, but to teach him that it’s OK to do things differently some days. So it’s trying to find that balance between how much routine keeps me sane, and how much routine keeps them sane without pandering to the… unnecessary sort of, like, rigidness.