My draft list of on going skirmishes is as follows:
- Remember that nice paediatrician we saw in November? Well, it turns out, I was right not to get my hopes up, even after follow up phone calls from my good self, we have heard exactly; zip, nada, nothing. That second opinion on the psychology assessment? Nothing. That referral to the feeding clinic in London? Zilch.
- The old thorny issue of the orthotic shoes has reared its ugly head again, Rory, the irresponsible thug, has only gone and grown out of the last pair! The cheek of him. We've been measured for a new pair, and assured that we need them, but the approval ? A big fat nothing, we wait.
- We made many official complaints about the fact that Enable Ireland, in knowingly referring our son to a dangerous speech therapist, were in breach of Children First national child protection guidelines. This resulted in a lengthy HSE report, which stated that there were serious questions to be answered by Enable Ireland. Silence drifts off the now, dusty report. We were advised to get a good legal team behind us, as the serried ranks of safety net quangos, set up to investigate, are completely impotent. Any one for a spot of public sector cuts here?
- A TD raised a question in the Dail on our behalf. What did we get? A letter from my old friend - (the 'do you know how much you son has cost us?' manager from Community Don't Care) listing just how much therapy Rory's getting. No word on child protection guidelines or Enable Ireland's conduct though.
- We returned to the Ombudsman for Children on the whole sorry affair. We were met with a polite, please form an orderly queue, response from an overloaded case worker.
- We have refused to darken the door of Enable Ireland until we get some answers, we have no confidence in their vetting procedure for hiring staff. As a result, we can't access services as Rory's case cannot be transferred to community services, without first going through an internal inquiry in Enable Ireland - Frankly, after what we've seen of that excuse for an organisation, I'd rather stick hot needles in my eyes. We get regular letters expressing concern for Rory's best interests from the Director of Services, a misnomer if ever there was one, she doesn't direct and we haven't seen any services! She must type them while oiling the lock on the stable door as the horse runs down the driveway! She even threatened to withdraw his special needs assistant from pre-school if we didn't behave. Yawn.
- We have to wind ourselves up for major surgery this summer, it will happen in the UK as the expertise is not available in Ireland. I have no problem with this, but it will, however, demand a certain amount of logistical planning on our part. I need energy for that. I don't want to waste my time playing administrative ping pong with Mary Harney and her merry band of HSE muppets.
I am starting this year on a positive note, I'm still buoyed up by our first ever healthy family Christmas. I refuse to be drawn into meaningless paper chases with idiots. Tempted though I am, to launch in, all guns blazing, it's a long year ahead and I have had 5 long years behind me.
So in the interest of sticking to my fresh new year's resolutions, I'm changing the way I react and I'm taking a break. I hope to return renewed, refreshed, recycled and recharged. I will be busy smelling the roses and hoping like hell, I don't revert, regress and react!
Yours in peace and harmony.....