Rebecca (mother of 2, daughter Sarah, 8 years, has Pallister-Killian syndrome): Part of having a child like Sarah, with all of her disabilities is just the day-to-day logistics. There are just lots of little systems and processes that you can put in place that make your life easier. Certainly, routines is a big part of that. Knowing what’s going to happen, when. And then when you have those routines down pat, you can let other people know what those routines are and that makes it much more easier for you and for your child to cope with change.
Sarah (mother of 3, son Jimmy, 6 years, has Fragile X syndrome): Wherever you go and whatever you do, you need a bag of tricks. Whether it’s actually physically a bag of tricks or whether it’s just a bag of tricks in the sense of games and ideas or songs, or something that might get him through that difficult time and move him into the next, whatever it might be. So, I think you’ve just got to constantly--you just have to be really in control, I suppose. In control of what you can control and be flexible with what you can’t.
Rebecca: Some of the adaptations we’ve had to make as she’s got older would be things along the lines of getting used to different types of respite and different types of activities for Sarah. Being brave enough to allow lots of different people to care for her, but also, you know, the level of preparation that goes into making sure that they can care for her effectively.
One of the things that I did very early on when I was pregnant with my second child, Hannah, was to create an instruction manual for Sarah. Because I was worried that someone would have to step in and look after Sarah. It includes things like what a regular day is like for Sarah and the medications that go in with her food and all that sort of stuff. So the really practical, minute to minute, day to day, what does she need and what time of day. Partially for my peace of mind but also for theirs. They sort of feel that they’ve got a reference to go to, ‘Okay, if I’m unsure, this is what I do.’
Sarah: I used to type out lists, like: at 9:10 he likes watching this show; 9:30 eat this piece of food or fruit or whatever it might be, you know. Have this blanket and this toy that’s going to comfort them to help them go to sleep at this time. So super, super organised, I think, is the best tip to give.