Monday, 12 January 2009

Taking Stock

I'm taking a little rest for the next two weeks, so may not be blogging for the duration. I am going to clear my head, draw the battle lines and carefully choose my campaigns.

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.....

Friday, 9 January 2009

Good Riddance to 2008!

Well, we made it! Can you believe it? A whole 12 days of Christmas without a single visit to a hospital our first since 2002! I have to admit, I was nervous for a while there, I didn't think we'd pull it off, but we did! Admittedly, by the hair of our chinny chin chins, but lets not quibble. Christmas week was spent on cough watch, this was a real hum dinger, so harsh, it involved vomiting and occasional expulsion of the NG tube (not pleasant!). I was a nervous wreck and pulled out my shock and awe weapons from my well stocked medical arsenal. I pelted it with steroids and nebulizers those bugs didn't stand a chance. Attila The Mum was on duty!Peace and harmony was restored by Dec 23rd, then the bugs re-grouped and launched a counter attack on Attila herself on the 26th! We're still slugging it out two weeks later.

But what a joy, coughing and spluttering not withstanding, we lounged in front of the telly, squabbled over the Quality Streets and moved the official time of wine o'clock to a seasonally early hour, sometimes even before dark! Oh the decadence! Santa impressed, Peppa Pig's house arrived to the delight of our youngest unbeliever, who has now has a Road to Damascus type conversion on the Santa front. He also dazzled Jess, who is now more sure than ever of his bona fides. It brought a tear to this old cynic's eye, I can tell you.

And so to a new year. I have to admit that I could not wait to usher 2008 out the door, like an unwanted guest or last week's fish it had left a very bad smell in my consciousness. After some reflection, I can trace the start of my exhaustion, confusion and heartache to the 15th of Jan last year. The date of the infamous "Oh you'd have to go to Australia to see her" conversation with a senior staff member of Enable Ireland. It went downhill from there. We haven't reached the bottom of that dip yet, I'm still not convinced that we will get any satisfaction without legal action. For obvious energy conservation reasons I am reluctant to take that route.

And that leads me on to this year's resolutions: Apart from the obvious, lose weight, get fit, see more of my friends, shout less at my kids, promote world peace and win the lotto, I'm trying to set realistic goals. This is purely for self preservation, as I couldn't stand the crush of not keeping them again this year. So here goes;

* Get a new bladder for boy wonder - surgery is scheduled for next summer

* Eat a meal with boy wonder - ( he told me his resolution was to learn to eat with his mouth)

* Try not to get as upset by the threats and general bullying from the HSE et al bearing in mind that they will never change, so to survive, I have to change the way I react to them. Please feel free to remind me of this if I start to whinge and rant!

*Do something for myself, maybe return to education.

Do, please, keep score and remind me of the ones which are in my power to achieve.
God grant me the power to make resolutions I can achieve,
The patience to say, hell, it's not worth it, to the ones I can't
And the wisdom to know the difference

A very happy new year to you all, and please stay with us for another while, we're still in need of your continued support. You have no idea how much it has sustained us through the war.