The Lack of Respite and Resources

Both my sister and I have suffered from severe sleep deprivation for a number of years now because our kids don't sleep.  Now we have a diagnosis and are linking in with services we have been asking for what sort of respite we could get.  The problem is there is no money in the Australian health system for children with disability.  Everything is being run on a shoestring budget, the waiting lists are usually 6 to 8  months long and kids are getting therapy once a fortnight if they are lucky.  It's fine if you have money, you can pay for it all privately at around $140 per session, but for those of us who can't afford that we just have to muddle through the system and hope it's enough.

And the kids aren't the only ones treading water.  We can't afford to put Connor and Merryn into daycare.  Not that I actually want to, I love my kids and I chose to be a stay at home mum so I could be with them while they were little.  I am of the belief you don't bring another person into the world and then send them off to other people to raise (yes I know a lot of people disagree with me on that point).  But with the long sleepless days and nights I have, it would be nice to have a few hours a week where someone else could watch the kids while I have a nap or heaven forbid, go out and have a coffee in peace.

Unfortunately we aren't a severe enough case to qualify for any respite at all.  There is such little money in the system for respite that even someone like my nephew who is FXS, has been tube/peg fed since 3 weeks old, becomes hysterical when taken out of his house, and has to be fed tiny amounts every 2 hours (if he is given proper size feeds he has fits and passes out) is only severe enough for 1 hour a week.  My sister is mentally and physically exhausted (and I'm not far behind her) and our government is cutting funding from disability services so they can get the budget in surplus!  The people we are talking to want to help us, they can see we need help, but they can't do anything about it.  They have to wade through a sea of paperwork and red tape and justify every tiny movement they make.

So today I'm going to my sisters house and we are going to try to do an OT session of our own for the boys.  We'll make cups of tea to stay awake and we will see if we can find a way to treat our boys ourselves.  What else can we do, we certainly can't just stand by and wait for our government to get of their hands.