Jane Holmes Blog: Please don't make us fight more than we have toBy Jane Holmes
January 23, 2013
I've probably said this before, but if you asked us parents of disabled children what they spend most of our time doing, most of us would say 'fight'.
Fighting for decisions a lot of the time, fighting against being fobbed off and fighting for essential things for our children, too, like equipment, support and medical care.
So why is it necessary for us to constantly have to push? To sit on the phone and stay on hold until someone else feels like doing their job?
Why do people, who work from 9 to 5, make us wait, often complaining that they are too busy?
Why are we expected to blithely accept that they are 'in a meeting', when they were supposed to get back to us days ago about something that will potentially change the life of our child?
Well, in part it is of course a funding issue.
No organisation likes spending money, they all have budgets to stick to and often this clashes with their obligation.
So, in order to prolong the decision, they often just don't respond.
But chasing people for answers to things they have a duty to provide is a very common and very stressful.
So what I am saying to service providers of all types is, please don't make us fight.
Life is hard enough.
Often we are existing on next to no sleep, are so worried that we can barely think straight and the stress threatens to overwhelm us all the time.
Making us wait, fobbing us off and delaying decisions about things which are essential for our children may be in a day's work for you. It may be easier for you to chuck something over to your inbox and leave it until Monday, or it may be irritating to have to fend off yet another anxious phone call. But for us, it means more sleepless nights.
It means a ruined weekend, which is often the only time we have to catch up. It means yet more stress, upon stress, engulfing us. And it means that you don't care as much as you should.