Alison (mother of 2 children, including 1 with Asperger’s): When you’re battling with something you don’t really understand, there’s a huge learning curve, so a lot of the initial time is spent just trying to understand what’s going on. Because I’ve got two children, we’ve got two children. You don’t parent them the same. The way we parent our neurotypical daughter is very, very different to the way we parent Ellis. That was a huge learning curve, because you can’t parent them the same way. It doesn’t work. And that’s hard. Umm, people again can’t understand why it looks like you’re letting him get away with things, when you’re really not.
Bobby (father of 2 children, including 1 autistic child): There are a lot of challenges, umm, challenges with the development, challenges with his speech, challenges with umm… What our challenges are, is: how would he go in primary school? Would he be set back, in certain situations. For example, if he gets bullied, would he be set back? And then all the work we’ve done won’t be a waste, but will be umm… very disappointing because of something that’s happened outside of our control. Our biggest challenges are just basically helping Peter becoming a little boy – a five-year-old little boy – that’s like every other five-year-old little boy, who wants to just go out there and play and be accepted, for who he is, not what he has.
Jane (mother of 2 children, including 1 with Asperger’s): I think one of the hardest things is the umm… the fact that he doesn’t enjoy people’s company. I mean, we’re social creatures so it’s really hard to see a child just want to be by themselves all the time.
Sharon (mother of 2 children, including 1 autistic child): There was probably a period when Peter – the communication wasn’t coming – and that was a really, really difficult period, so between two-and-a-half and three-and-a-half was probably the most turbulent year we’d had. Umm, because we didn’t know what he wanted, how he wanted it, when he wanted it. And that’s where the PECs – the picture exchange cards – really helped, and encouraged him to sort of make that initiation and that communication when it was something that he really wanted.
Shannon (father of 4 children, including 3 autistic children): I’d like to be able to understand what Dominic’s thinking, when he’s doing his really intense arm-flaps – that’s what the hardest thing is: we don’t know why. He can be sitting here happy as anything, playing with his car, and the next thing his arms are going and he’s getting really intense. Before it was just sort of his arms flapping [moves hands to demonstrate] but now he sort of twists his hand around and sort of moves his body [demonstrates with arm] and he goes really rigid. So… but when he’s really involved in it, you can’t get him out. You can see him try to break out of it, which is hard to see.
Marita (mother of 2 autistic children): I think the most challenging thing is actually just all the little things you have to keep on top of. So you have to remember what you’re saying. Umm, Heidi, because of her sensory needs, she won’t eat food that touches, so when I make macaroni and cheese for dinner, there’s a bowl of macaroni, there’s the cheese sauce and then there’s the vegetables. And she dips them into the cheese sauce, and it’s all separate. And I have to remember these things, and if I accidentally make them together, it’s a disaster. And having to remember the right toy to go to bed or, you know, it’s Tuesday, I need this special thing for school because it’s Tuesday. The little things, they kind of build up, and at the end of the week, I fall to pieces because I’m exhausted trying to remember it all through the week.
Joanne (mother of 4 children, including 2 autistic children): The challenges I found, umm, even now, though my children are in school, the constant challenge is they’re always behind. They’re always behind academically so you’re always playing catch-up, so it’s that constant ‘OK, what can I do next? How can I teach her to tell the time? How can I try and get her to tie her shoelaces?’ And it’s that you’re always pushing. It keeps you awake at night, it keeps you awake at night as to ‘OK what can I do now to help my child?’
Rachel (mother of 4 children, including 3 autistic children): The biggest challenge, like for my personal challenge is learning to pick and choose what is really relevant. So I want to pick my battles and not sweat the small stuff and spend my energy on the big stuff.
Joanne: There’s extra financial burdens with special needs children. There’s the fact that you ignore your husband more because you’re spending so much time focusing on the children and their learning abilities. So it’s a lot more… harder on a marriage, yes. But, we’ve hung in there [laughs].
Sharon: I guess it’s really important that, you know, you make time as a couple. But sometimes it’s not always possible. I mean we’re very lucky that my father-in-law and my mother-in-law are a great support network. Peter has sleepovers there all the time, so we get respite in that respect. That’s not a luxury that a lot of people have, in our position. And, umm, but it’s really important that we can just switch off, because I think just as much as there is risk of Peter being, if you like, over-therapised, and having every day sort of, ‘What therapy do we need to be doing today?’ umm, I think he needs to have that level of non-structure, just as much as we need a relief, or a break from the structured events in the day sometimes, just to let loose and do what we like.
Peter (father of 2 children, including 1 with Asperger’s): Get as much help as you can. Don’t be afraid to ask. There’s a lot of support out there but you have to go and look for it. And you really have to, umm, where we were ten years ago – well, I suppose six, seven, eight years ago – I don’t think there was that awareness that there is now. And it’s much more prominent than it was. The avenues have opened up a little bit to access help, but you really still have to knock down doors, find individuals who will support you and hang onto them, but just use every avenue that you’ve got, to get help.
Marita: There’s struggles, it’s not always easy. But it’s not always really hard either. There’s times where I just go ‘That’s amazing.’ We’re walking down the street during Autumn and the leaves are being blown out of the trees and Heidi goes ‘The leaves are pouring down.’ Because it looks like they’re just being poured down. And that amazing way of seeing things so differently – I just love it.