Sarah (mother of 3, son Jimmy, 6 years, has Fragile X syndrome): Well family holidays are always good fun. So I think we have to take into account that Jimmy’s water obsessed and Jimmy loves the beach. Which so then for us means, a couple of things, it means our holiday usually is always at a beach. But it can’t be right beside the beach because otherwise he would just run straight in to the water.
So when we’re booking places and things like that, we always need to be quite clear with them, that yeah, we’re happy that we are close to the beach. But we don’t necessarily want to see the water. Because if we see the water, we have a child that wants to get to the water. So if we’re up on a balcony, he’s going to try and climb over the balcony to get to the water. Or if we’re close to a pool, he’ll do whatever he can sort of to get to the pool. So usually we’re on – we’re in the rooms that nobody else wants, because we’re on the back end of the motel or wherever it might be, or not facing the beach. Because obviously he has that inclination for water.
So, sometimes that can create a bit of a problem, but in most places they’re pretty accommodating. But you do need to really clearly spell it out and let them know why, don’t just say why we just don’t want to see the water. They really need to know or understand why, why that’s the case. And we’ve found that most places are really accommodating, but you need to really specify.
Rebecca (mother of 2, daughter Sarah, 8 years, has Pallister-Killian Syndrome): Family holidays are difficult, yeah, there’s two ways we can do it. We can either go with Sarah, which means finding accommodation that is wheelchair accessible, which is actually really difficult. Most hotels and motels will say yes we have a wheelchair accessible room, but they won’t cater for a family. They’re usually a single room, because they have this idea that someone in a wheelchair travels with just one carer, or they’re an elderly couple or something.
So families travelling with a child with a disability often find that’s quite difficult. We have often gone to the cabins in caravan parks, but even then you still have to negotiate those stairs. Very few of them don’t have steps up to the front, and they have very narrow little doorways. So it is challenging taking Sarah on a holiday.
What we have done a lot, is put Sarah in to Very Special Kids House, which is an amazing respite facility, we are so lucky to have access to it. We feel completely comfortable when she’s there, we know that she has a wonderful time, and she’s really well cared for. That’s allowed us to go on holidays, you know we took Hannah up to Queensland a couple of years ago, and it was great. But you have those moments.
I was sitting at the dolphin show at SeaWorld and they have lovely wheelchair parking spaces out the front. I’m thinking Sarah would love this, and she just couldn’t be there, we can’t take her on a plane. There’s no way that you can change an eight year old nappy on a plane, and we’d have to put her wheelchair in the cargo hold, and she couldn’t sit that upright in a plane seat for that long.
So if we want to go anywhere out of state, we either drive a really long way and hopefully find accommodation or Sarah stays home. There’s a really awful bit of guilt that goes with trying to enjoy your holiday, but knowing that your whole family’s not with you.
If we’re having a holiday with Sarah, we need to really look in to the accommodation very carefully. We need to make sure – we tend to know where the nearest hospital is. Yeah, it’s sort of sad, but generally we like to have it very clearly mapped out, of okay if she gets sick where would we go. Because we’ve been caught a couple of times with that.
Sarah: Jimmy has Fragile X and it is prone to children having fits and seizures and things like that. Now we haven’t had them, but if we do when we’re in an unfamiliar environment, we would like a hospital to be really close by. Because if it’s not, obviously it turns in to quite a serious issue. So we are very mindful of that, that we are quite close, always close to somewhere that has quite a good medical facility. So we’re not camping out in the back of nowhere, well there’s no water, so we wouldn’t go there anyway. But yeah, if there’s not something like that close by, we actually have to rule that out as well. And if there’s lots of stairs and things like that, we’d probably rule it out.
Rebecca: We have to be realistic about what we can and can’t do. Sometimes it might be just that Tim might stay with Sarah and I’ll take Hannah off to do something, because it’s just not something that Sarah can do. We tend to not go to beaches that much with Sarah, because a wheelchair on the beach can be quite difficult. And it’s an expensive wheelchair, we don’t really want to get sand in all the bearings either. So we just have to choose our activities very carefully.