Part 2.

Really much of what we do has been driven by the fact we could not find what we needed, I had been in IT and design for many (too many) years and found that I was frequently disappointed by products recommended to us, a sleep system to help positioning costing many thousands of dollars was left unused after the first month, quite simply we found a flannel sheet and many (yes they were already in the bedroom) soft teddybears actually worked better.

The problem was this was not infrequent, things purchased through the NDIS frequently were approved too late, and the item was no-longer able to do what it originally needed to do. We also spent a lot of time in and out of hospital, and could not fault the doctors and nurses, but the system is not designed for children and young adults with a disability who may be unable to tell people about their needs. It was a case of someone needed to be with her all the time. Too little notice is frequently taken of what parents know , specialists are frequently seen on atypical days and not all listen to what the parents are saying.

Likewise we learnt that things that we were told she should not do were the things she loved,being around animals, going on a slide or swing, a drive with all the car windows open. So we just worked on ways for her to be able to do things with the family, or that may make life more sensible and easier for everyone