I think that as a parent of children with extreme special needs it can be very difficult to know who you can really trust at a medical/health/professional level.

Before the kids came along, you may have been very trusting of doctors and the health system, but now, possibly dozens of hospital stays later, countless specialists visits later, you have become a little wiser, a little more questioning, doubting.  This isn’t necessarily a bad thing – you may have assumed in the early days that the doctor always knows best, or that the health system is always going to be on your side, and now you’ve realised this isn’t always the case and you need to have your wits about you and your eyes wide open. 

When you come across a fantastic paediatrician (as we have) you hold onto them like gold, because not all paediatricians are fantastic.  You begin to recognise that this specialist will go the extra mile – that one won’t.  This one will push for you – that one won’t be bothered.

I’m not trying to discredit the health system or have a whinge about hospital staff – because the majority of my experiences have actually been positive.  But I have had had my fair share of bad ones too, and simply want to make the point that you can tend to become very, very wary. 

Because I trust our paediatrician, when major issues arise involving other doctors/specialists, I always run it past her and (to her credit) she has supplied us with her cell phone number to enable us to do this.  Her support has been invaluable over the years!!

So how does this fit in with the “respite saga?”  Looking around the room at the meeting we had (refer to my earlier blogs), I recognised in the faces of the other parents that same distrust.  How do we know that these people are going to keep their word?  How can we be sure that the respite facilities they build will be up to the standard our children need?  We are so used to having to fight for everything our kids have – from education through to medical attention, from equipment through to respite care, that we have to subconsciously be on guard at all times against any possible threat.

I found it very helpful to run my own fears about the whole respite things past someone I trust “in the know” recently.  I had been meaning to ring her for a chat, then literally bumped into her in a mall the other day. 

Her comments about the plans for the respite facility we use for our son were really encouraging.  She had confidence in the intent and integrity of those proposing the changes.  She shared our concerns about the whole negativity surrounding the “institution” – and felt it would be very difficult to staff a number of smaller respite facilities dotted around Auckland with the quality of registered nurses that would be required – even they struggle to do this sometimes.  She had no qualms about the ultimate sale or lease of the entire land if the money could be used for the greater good of a larger number of people across a broader geographical area.

It was good to hear all of this.  But I still would like to see the plans, the proposals, then see one of these respite facilities up and running before I believe.  (I’m a doubting Thomas!!!)  And I still think it would be a real shame to lose the fantastic, beautiful site at some time in the future (this isn’t in jeopardy at all at present) even tho it would bring in lots of money.  I sort of want to have my cake and eat it too I guess.  Keep this one and build the new ones.

In some ways I don’t know what to think!  What do you think?