Rebecca (mother of 2, daughter Sarah, 8 years, has Pallister-Killian syndrome): Practical things, getting the house sorted out, getting the ramps, getting the doorways wide enough, getting the equipment that you need when you need it or when you think you’re about to need it because there’s probably going to be a wait time. So as soon as you see a need for equipment, get onto it. When Sarah started kinder it was about the same time that she got her wheelchair. So at the same time that I was having to do a lot more pick-ups and drop-offs, she suddenly had this bit of equipment that was incredibly heavy. So getting that in and out of the wagon, the wheelchair in and out of the wagon, just became very, very difficult. So we went through the process of getting a modified van which has a ramp that drops down the back and I didn’t really want to drive a van, but we managed to find one that’s actually quite comfortable to drive.
Karen (mother of 3, daughter Ginger, 7 years, has Down syndrome): Ginger doesn’t need any mobility devices or anything like that. You know, we do have a friend whose little boy with Down syndrome didn’t walk until I think he was almost 4, so he had to have a walker for quite some time. So that was difficult for her. It didn’t fold up and fit in the boot like a pram does and things like that. You know, I’ve got a cousin that has Rhett’s syndrome and, you know, for their family, so for my aunty and uncle, they had to install a lift and they have a wheelchair and she can’t sit up unaided.
Rebecca: We had always planned to do some renovations to our house so we engaged an architect. From doing that we ended up with a ramp up the side of the house, we’ve got a really wide door up the back. Sarah’s room has a wide door and plenty of space for her bed and the hoist and we also have a modified bathroom.
Sarah (mother of 3, son Jimmy, 6 years, has Fragile X syndrome): One of the criteria was that it was a one-storey, no two-storeys. So, no steps. The other thing we looked at was space. Jimmy really likes his own space and needs time out. So he has his room which is his own space and he’s very fortunate here that he sort of has his own lounge room where he can have his space and it’s got some tactile cushions and a big rug that he can lie on and things like that. So he has 2 rooms and we’ve created some special space just for him and for him to have that time out.