Free Falling into Normal

For over nine years, I have craved normal so much I could almost taste it, but in the elasticity of that term I now fear I may have wished beyond the stretch. Normal takes some adjustment and I don't know if I can get enough pliability back into the elastic band holding my life to allow me dangle slowly into a soft landing on normal soil.

My days were measured in 60ml syringe-fills of fluid, our mealtimes a liquid formula of complete nutrition and although stressful, we had become accustomed to its rhythm. The fasting pre and post anti-rejection medication was followed by the feasting of night feed pump. Hunger never stalked our house, it never got a chance, locked out as it was by the security sentinel of naso-gastric tube feeding.

It's not like we haven't prepared for this day, it's not like we haven't worked hard, throwing every form of sensory oral-motor therapy at it. It's not like we haven't seen 'ologists from here to kingdom come. For years we chipped at the intractable monolith of oral aversion with bite blocks, chewy tubes and oral face massagers. We pleaded, we begged, we threatened and we bribed and still he said no.

I don't know what turned it round but somewhere around the end of last year, I sensed he was ready, don't ask me how but I just knew. At this stage in my combat training at extreme parenting when I see a chink in the anti-eating wall - I become like a heat-seeking missile and trow enough artillery to sink a North Korean despot at the problem! And Like any North Korean despot, my Boy Wonder played the brinkmanship card all the way to seconds before the deadline then acquiesced with his customary charm.

The tube came out a week ago, he is eating like a horse I'm working on this new normal life of ours but some how I feel bereft. I don't know what to do with my time, I'm not very good at normal and I wonder if maybe there is a Fás course for this kind of thing. Could I be taught the skills of normal life? I also need a maternal NCT - my last one was post transplant. I'm sure it happens to many maternal front liners - those who have been on red alert for so long with their sick children that they can't turn down the thermostat on their flight-or-fight radar. My call to arms is all too ever present and like some now defunct post-peace-treaty freedom fighter, I'm finding decommissioning a challenge.

As always Boy Wonder has adapted with ease, asking for food albeit puréed, complaining of hunger and I am so shocked by the instinctual nature of his demands that I have to ask him to repeat his request.

This will be a beautiful adjustment once I allow myself to lay down my weapons and embrace yet another, glorious transplant dividend: normal eating by a hungry nine-year-old boy.

What does one do when la lucha no continua?

Cheers,
Ann

The Sweet, Sweet Taste of Persistence

After nine long years of being fed by a naso-gastric tube, (a world-record in paediatric medicine I'd bet) this week we start the long process of weaning Boy Wonder off his feeding tube.

I can't quite believe I am about to write this post! The whole raison d’être of this blog seems to finally be materialising before my very eyes. Like every 'normal' milestone we have met along the way, this one too threatens to overwhelm me by the sheer beauty of it's very bland, quotidian nature. At the risk of becoming a complete cliché; I do have to repeat that for me the wonder has been in the ordinary - when you live outside of 'normal' the chink is never too wide, so the wonder rushes in when you least expect it.

We have seen 'ologists, we've seen specialists, we've tried bribery, pleading, protests, threats and every other trick in our parenting arsenal; all have failed. I stopped trying to push the agenda about two years ago, realising then that my Boy was blessed with a will of steel; even my legendary pig-headedness was no match for this young man who had confounded all odds. I put myself in his shoes and thought what's in it for him? Food is terrifying, he has never learnt to eat, he has never known hunger suffering as he did from hormonal anorexia, due to his lack of kidneys. Even when transplanted with his Dad's  second hand cast off, although he felt hunger - he didn't know what it was nor what to do about it.  The most basic human driving force was unknown to him. The dilemma was how to teach it if he refused, through sheer abject terror, to put food in his mouth.

This was a major brick wall for his parents, we both come from a long line of great eaters on both sides - in other words we love our food. Personally I love thinking about it, talking about it, cooking it and more recently I've taken to growing it - all in the hope of waking up this food gene that Mr Mendel swore to me through school biology texts he should have inherited.

Thanks to the work of many great people not least a gifted Special Needs Assistant at school, Boy Wonder will now eat small amounts of puréed food which we then supplement with 800ml of complete nutrition formula via feeding pump overnight.  We have been working steadily over the last five years with an American Oral Motor Specialist to try to break down his oral aversion. Finally a Skype conference with her last week proved so successful that she set our weaning plan in motion.

This week he has reduced his overnight intake by 100 ml and guess what? He's hungry and he knows it.

And now starts another miracle on our road to three meals a day, watch this space ...

Cheers,
Annb

Ní Féidir Liom - No I Can't

A mixed year is drawing to a close and I can't say I'm sorry - we've had a few battles, with many a triumph mind you, but we're battle weary all the same. 2011 started with a flood, progressed to blocked pipes and rounded off nicely in a dose of pneumonia.

Instead of new year's resolutions I've drawn up, what I like to call my Ní Féidir Liom list. As you may have guessed, I've always been more prone to rant than cant.

Here's a few of my more pressing I-just-can't-and-don't-even-think-of-asking-me rants on the last year:

The Ní Féidir Liom list.

No I can't understand why we as a nation owe money to someone we don't even know - did nobody think to check the signature on the cheque when we signed on the dotted line?

No I can't say I'm surprised that, a year after our last meeting, Enable Ireland still haven't answered our concerns about their breaches of Irish child protection policy. I can say that I'm much relieved that we no longer have to rely on their services for Boy Wonder but I do feel a kind of survivor's guilt for those who still do.

No I can't help being stunned by the kindness of strangers.

No I can't understand the hype surrounding sun-dried tomatoes.

No I can't help but be amazed by the wonderful support and energy we get from teachers and special needs assistants.

No I can't stop smiling every time I watch Boy Wonder singing Karaoke.

No I can't understand why a consultant gets snotty when you respectfully ask for a second medical opinion. I would love an insight on that one!

No I can't wait to get to London's Great Ormond Street Hospital to hear that second opinion.

No I still can't fit into a size 10 jeans - wise up love it's never going to happen!

No I can't thank people enough for their support.

No I can't but hope that 2012 brings us all more good fortune.

Thanks for the company and Happy New Year to you all.

Cheers,

Annb

A Winter Tonic.

It was one of those days, I had foolishly turned on the radio only to be assaulted by a torrent of fiscal doom and gloom. The rain was of the biblical variety and the weak spot in the kitchen had sprung a leak, spilling an expanding pool of rainwater across the floor towards the fridge. The mop was nowhere to be found and the anaemic light from the blinking bulb in the hall was vainly attempting to augment the darkness of this November noon; scuppering any hopes of a mop search and rescue mission.

I could feel the clouds lowering and then all of sudden, they were lifted by that reassuring ping of my mobile phone announcing an incoming message. Someone out there was thinking of me. It was a picture message from school. In a single flash of communication technology, this one simple image immunized me against this year's two deadly doses: the weather and the economy. I hope it works for you!

Cheers,

Ann

Subordinated Debt

It's the phrase on the lips of every eejit who's trying to look clever. Personally I think the term was invented in a board room somewhere south of Hades, to be used as a tool to bludgeon the general population into a pulp. I have to admit it's pretty effective, since only fifteen hundred people turned up to protest in Dublin last week at the extent of the country's economic hangover.

Being a simpleton with a less than competent grasp on the state on my own overdraft never mind the national debt, I resorted to my old friend Google. So here goes a bluffer's guide to Subordinated Debt :

• In finance, subordinated debt (also known as subordinated loan, subordinated bond, subordinated debenture or junior debt) is debt which ranks after other debts should a company fall into receivership or be closed.
  en.wikipedia.org/wiki/Subordinated_debt

• Term covering hybrid core capital and subordinated loan capital. Only losses exceeding the shareholders' equity are covered.
  www.nationalirishbank.ie/en-ie/About-National-Irish-Bank/Bank-in-brief/the-crisis/Pages/Dictionary.aspx

• Debt that carries a lower-priority claim on issuer's income or assets than that of other (senior) debt.
  www.freddiemac.com/smm/s_z.htm

There were many more - Google it for yourself, it makes for interesting reading. It occurred to me that children's health services will become the subordinated debt of our solution to the mess in which we find ourselves.

So if I understand this correctly, (which lets face it, in my case is a big 'if') the economic unit on which our future depends is currently being subordinated in favour of the senior units who screwed the whole thing up in the first place.

Permit me an analogy here: a child like our Boy Wonder requires expensive medical treatment to keep him alive, this treatment is attractive to senior medical units because it shows the tangible result of extending the life of that child thus reducing the national child mortality rate, which reflects well internationally on the country as a whole. The effort vs reward equation stacks up well in the short term and saving his life is rightly seen as a senior debt.

Once the danger has passed, the child then slides down to become the subordinated debt of the local primary care authority. In the eyes of the primary care bosses, the child will neither exert enough pressure nor bring sufficient reward to warrant being considered as a senior debt. As a subordinated debt, there is no incentive to provide specialist intervention to allow the child to reach their developmental targets.

When the child ends up in a classroom requiring a special needs assistant or specialist equipment, they can migrate to being a senior debt liability again but the debt has now passed to the education department. The education mandarins will in turn strive to reduce their level of debt on this child by redefining the terms of their liability. Simply put, they will change the terms of the child's entitlement. This change in the terms of entitlement will result in creative reporting from the 'ologists in primary care to meet these new terms and ensure they can off-load the child from their debt portfolio. And so the debt shifts back and forth changing status with each department.

What we all know about debt is that we tend to prioritize our repayments in favour of those yielding the biggest baseball bats should we refuse to pay. Currently the ones holding those lumps of lumber, are unidentified bond holders; nameless, faceless entities beating our children out of the way while they charge to the top of the queue.

This is what comes of living in an economy instead of a society.

Cheers,

Ann

Late and Lame

The HSE have now confirmed the shocking total of 37 children who have died while in the care of the state, 18 of whom died of 'unnatural causes'. We wonder how this can happen and why nobody has been talking about it. Let me give you a little insight into why these appalling statistics do not surprise me.

As you all are sick of hearing - in July 2008 boy wonder was referred to a speech therapist employed by Enable Ireland; a HSE funded organisation charged with the care of children with a physical disability. In the words of the Attorney General of the State of California, this particular therapist was ' a threat to public safety'. The Children First officer charged with the implementation of child protection guidelines within the HSE West issued a report in September 2008 stating that by referring my child to this therapist, Enable Ireland were in breach of these guidelines. It is almost two years since that report - and almost a year since I had my son's services transferred to another service provider. In all that time I had no contact from Enable Ireland, until a letter arrived last week from the medical director who is a consultant paediatrician.

This is what it said:

I would be very pleased to discuss Rory with you at a time that is convenient.

I know that you had a number of concerns about Rory and the Enable Ireland services and would wish to address these with you.

Best Wishes etc etc.

Two years after such a serious incident I get this kind of nonsensical response. And the icing on the cake: both my name and address were written incorrectly.

Now tell me, would you bother meeting a muppet like this?

Cheers,

Ann

Punching Politicians

I listened to James McDonagh as he burst into the Green Party conference on the news yesterday. I heard his anger and frustration, while his distressed 11 year old daughter asked him to stop shouting. As the tears rolled down my face, I realised that it could have been me. I know that anger, that fear, that frustration brought on by exclusion. His child has special needs and has not attended school for a year, as there is no school to take her. She urgently needs speech therapy, occupational therapy and psychology services. Are we seeing a pattern here?

I thought of his state of sheer helpless hopelessness, at his wit's end, as official after official gives him the brush off, blaming cut backs for this 'regrettable state of affairs'. I remember planning acts of civil disobedience, I remember fantasizing about chaining myself to railings. One of my more brilliant plans involved defacing all the signage in Galway Community Care offices, by inserting the word 'don't' between Community and Care. I had even enlisted the support of other frustrated parents. Then Rory got sick and priorities shifted. I still regret not doing it. I know it was pointless and petty; but boy, it would have made me feel a whole lot better. The problem with dealing with grey bureaucrats, is the contamination factor; you begin to sink to their level of small minded power struggles. It is extremely difficult to retain your dignity. I was lucky to have the other kidney filter my more militant moods.

I have worked very hard to rid myself of the residual resentment and anger. The counselling helped for a while, until it began to seem pointless. Wine was also a pacifier, but had crippling side effects! Diversions such as a movie, a trashy novel or a night out with friends, provide temporary relief, by pressing pause on the angry whirring of your brain cells. However, there is nothing, (and believe me I've researched this at length, so I know of what I speak here), that will stop the gnawing sense of dread which wakes you in a cold sweat in the dead of night. The fear for your child's future, because you can't get the help needed to get them through the difficulties they face in their childhood. It's crippling, all consuming and no parent in any civilized world that I want to inhabit, should have to go through it. Have we learned nothing from our sordid past?

The sad fact of the matter for Mr McDonagh and his family, is that even if their daughter is given access to services, as is her right as a citizen of this state, the quality of service is based on an arbitrary post code lottery. Like us, she may meet a speech therapist who has been disbarred for unsafe practice in another jurisdiction. Like us, she may meet a psychologist, so uninterested in his job, that instead of trying new means to engage with her, will write her off as a vegetable, because he couldn't be arsed to even do a Google search on her condition.

At 11 years of age, she will doubtless fall into a black hole between primary and secondary school services. She could be really lucky, and make great progress with one practitioner over a few months, only to be transferred to another service and another waiting list because her current therapist must stop seeing her at the age of 12.

Rory is now aged six, and therefore outside the scope of that laughable oxymoron called Early Intervention. We have no idea who will take over his services. Enable Ireland have still not made a real commitment to Children First Child Protection Guidelines; so we cannot on principle, allow any new therapist to see him, having no guarantee that proper background checks have been carried out. He will yet again be without services, although for the purposes of official HSE records, he is listed as receiving a service, even if we have to join another four year waiting list.

What I have learned through all of this: is to trust my child. To have faith in his ability. By giving him space with lots of love and laughter, he has defied all the hideous limitations placed on him by grey officials, jaded by their jobs. If I had listened to them, my son would have been institutionalised by now, instead, he is holding his own in an Irish language mainstream school. We are fortunate that there appears to be no underlying developmental disorders, although if you listen to our speech therapist, she will try to tell you otherwise. She advised us against mainstream school, I ignored her. When I told her how well school was going, her terse response was: "I wonder how long that will last?". I'm very proud that I didn't punch her lights out, much as I may have wanted to. It's a sign that I've moved on. Mr McDonagh and his family have a long and difficult road behind and ahead of them. His isolation is palpable. I want to storm the gates of Leinster House with him. I want to punch John Gormley, Brian Cowen and Batt O'Keeffe for him. What will that achieve?

Did you know that President Mary McAleese is the patron of Enable Ireland? She, of the glowing tributes to the victims of institutional abuse. I wonder if she knows that her name lends an imprimatur to an organisation which does not adhere to even the most basic child protection principles?

Well done Mr McDonagh, I salute your bravery, your indignation and your protection of your child. I wish you strength, comfort and solidarity. But mostly I wish you a life where your daughter is allowed to fulfill her potential, and you can get back to getting some restful sleep at night.

Cheers,

Ann

London Calling

I don't quite know where to begin, such has been the level of activity in our hive of late. You may remember I mentioned a feeding assessment team in London. The very sensible developmental paediatrician in Galway had offered to refer us there last November. All very straight forward you might think. Yes very straight forward indeed. As with everything associated with the HSE, it took two visits 4 months apart, approx 662 phone calls, a small forest worth of paper work, 5 hours of misinformation, a bottle of gin (- mine -medicinal ), a very near urge to take up smoking after 9 years of abstinence, and a partridge in a pear tree to actually make it all happen.

A word to the wise here, if ever you are considering dealing with long term illness and the HSE, please, please go into training. Some ex-special forces type boot camp, with some serious 'what to do if you get captured in the desert by the other side' type psychological expertise thrown in. Without it, I fear you may crack at the first hurdle. As I have been doing HSE time for almost 6 years now, my energy is prone to the odd dip into despair. At just one such trough, the bloodhounds in Temple St, came charging down the hill to my aid. They got on the phone, they set up a rota, they badgered, they pestered, pleaded and I dare say even threatened until one day 3 weeks ago, an appointment was extracted at metaphorical gun point. It left me speechless, a rarity for me I can assure you.

We sprang into action, a scramble for the dog eared London A to Z. Pins were stuck in the Tube map, cross referencing address books to see who would be kind enough to put us up for the night. A plan percolated quite quickly. The other kidney was up to his eyes with work so another grown up had to be found to help with the journey. Auntie Mags, yet again stepped fearlessly up to the plate. (One of these days she's going to wise up; and we'll be in big trouble.)

So, on Tuesday, off we went, the 3 of us, on our adventure to see the nice man who was going to talk to Rory about eating with his mouth. Rory agreed to come along but was only going to give this nice man, a very brief moment of his time. Eating with his mouth, while still a hot topic of debate in our house, is paid only, lip service, by Rory!

He handled the journey with aplomb - a seasoned air traveler, the plane held little fascination even though it had jet engines and was actually leaving the country. This was nothing compared to the train that whisked us from the airport. It had conductors in uniform and a whistle at every station; now that was the epitome of cool.

I watched with wonder as he took all of this new environment in his stride, only complaining when we weren't seeing the nice man immediately we landed, as he was in a hurry to get back home.

We got to see the nice man, a gastroenterologist, and his team, a speech therapist, clinical psychologist and a dietitian, at midday on Wed. Rory showed his usual cool, interrupting the proceedings only occasionally to insist that we go to the airport, but generally charming the entire room.

I don't really know what I expected from the visit, I knew in my heart there was no magic bullet for this situation. I did wonder though, if there was something we hadn't tried. I also had very precise questions about Rory's motivation to eat and his ability to recognise hunger. It was really refreshing and comforting to sit in a room with people who see kids like Rory every day. They made no assumptions, no tut tutting, no; I can't classify him, so I should really concentrate on what he can't do instead of what he has achieved. None of the usual; I have no barometer with which to measure, so I'll just go and use the worst case scenario scale, the default setting.

They just agreed, concurred that yes this was all totally normal given his experience. They marvelled at what he has achieved. They gave some very helpful advice, explained some of the probable psychological processes going on for him right now and praised us all in how far we'd come. It was quite amazing really, they had so much faith in Rory, I was almost taken aback. I'm so used to having his shortcomings pointed out by therapists. They just confirmed my gut feelings - let him explore the world, let him get used to feeling well, and most importantly let him lead us.

I had been giving myself such a hard time that I hadn't been consistently working with food in a very structured manner. They understood the difficulties involved and suggested we work on the fly, choosing only activities that he enjoyed. No forcing, no reward system, no passivity. He has to learn to experience and enjoy tastes for himself, not to please someone else. It makes so much sense, I had always felt this but I was a lone voice here in the West.

Very interestingly, in light of last year's Enable Ireland fiasco, the gastroenterologist agreed that any investigations into his ability to swallow are pointless at this stage. We have no evidence to suggest there is a problem, and testing would be hugely traumatic. If you're reading this; Miss crazy lady speech therapist; can I just say, in as smug a tone as I can convey in writing?
I told you so!

I just hope that you are not still working with vulnerable kids, because it has taken me exactly one year, almost to the day, to prove the irrevocable damage you could have done to my son.

Next time you try to bully a parent, just remember you are only a Google search away from being found out.

You have been warned...

Cheers,
Ann

From the Sublime to the Downright Dangerous!

Hi All,

Well; the auspicious first anniversary has passed and we're all still talking to each other - a major achievement. Corks were popped, gifts and best wishes were gratefully received and big thick wedges of chocolate cake were consumed! A fine day was had by all. Thanks to all you new readers who have just logged on, your comments and visits have given us a much needed boost at a time when our energy was beginning to flag.

It was very therapeutic to be back in Temple St yesterday. The welcome was as warm as always but there was also a palpable sense of shared joy in Rory's progress. It must be so heart breaking for the many dedicated teams that staff our hospitals to have to preform precision work with only the brutally blunt instrument, that is the HSE management attitude, to guide them. I am constantly impressed at how they keep their souls and hearts in tact in the face of dangerous ineptitude. They are the true embodiment of grace under fire. As the other kidney put it so eloquently recently, - he remarked on how he had met countless Wayne Rooney's working in the health system over the last 5 years, but he has yet to meet an Alex Ferguson.
I think that about sums it up really.

That brings us nicely to our current impasse with Enable Ireland. An institution badly in need of a Ferguson style make over (I could name quite a few in there who could benefit from a footie boot being hurled at them)! Again the trauma of what we have endured at the hands of this organization has left me completely speechless, directionless and utterly devoid of hope. Let me try to put this into some kind of digestible narrative for you - again this story carries a health warning - for those of you who are squeamish about children's rights, log off now as this gets really nasty!

Way back in July, our HSE community speech therapist - (who had been doing some very fine work with our little lad), informed me that Enable had finally employed a speech therapist and since all our other services (occupational therapy, physiotherapy and psychology) were allegedly being delivered there, she felt that it would make sense to make the switch to their latest recruit. I have to admit I was uneasy about changing lanes again but I could see the sense in it, all the advice to date indicated that Rory should be seen by a multidisciplinary team. So files were passed, emails sent and calls were made.

I got to speak to this woman in mid July. Now here's where it starts to get decidedly murky. She was quite a force on the phone, as, although she had never actually seen my son, she seemed to be utterly convinced that he needed a very specific test called a cinefluor graphic study. She tut tutted dismissively when I told her I had never even heard of this, and remarked that this was just typical of this country, we were years behind, and she, being a highly qualified American who came from a long line of medical practitioners was clearly the only one who could sort this out. I would have to leave the country if necessary to have this done, and she even hinted that I had indeed been negligent of my son in not having insisted on this sooner. She assured me that if it were her own child or one of her nieces or nephews she would be causing a stink until this test was complete.When she wound down from her rant, I got her to translate the test into our archaic plain Hiberno-English. She was talking about a swallow test.

OK, now I could continue the conversation, we had sooo been here before. I explained that this had already been performed and that there was nothing wrong with Rory's swallow. This cut no sway with our rootin' tootin' yank friend. What the hell would they have known in Crumlin hospital? Anything could have happened since? There was nothing else for it but I had really better get my finger out and find myself a swallow tester stat! She then launched into a vitriolic invective about Enable Ireland and what a shambolic mess they were, particularly the management team. Now, while I had no problem with what she was saying, I did have a problem with the fact that she was saying it to me. I was, after all, her client, and she was, after all, an employee of that renowned organization. There was also that very distant niggling doubt in my mind that if she was a good as she proclaimed, what the hell was she doing working with what she considered to be a two bit operation?

So I managed to extricate myself from the, by now, extremely lengthy conversation by claiming the urgency of an impending school run! I came off the phone with a red ear and a really throbbing brain. Had I really been negligent? Was Rory's oral aversion really all my fault? How could I have not seen this before? Thankfully this self doubt, although profound, was short lived. I emailed the American specialist we had seen in Dublin in May. She confirmed my suspicions and advised against the test. Not only was it very dangerous -(it involves swallowing a large cup of glug called Barium) but it would have been extremely invasive for Rory and could have set us back years in terms of the trust we had built up in him allowing us near is mouth.

This got me very worried, something was very amiss. To satisfy my concerns I Googled the woman, she had an unusual surname so I figured she should be easy to track down. Nothing could have prepared me for what came next. Do remember, that I am very battle hardened but, even a veteran like me has their limits. There it was, a mere 19 seconds later, in black and white, flashing before me on my computer screen - this woman had been struck off in California! I was looking at a petition to renew a surrendered license to practice. Surely there was a mistake, this couldn't be happening - you assume there are vetting procedures in place. To be absolutely sure, I rang the the Californian Speech -Language Pathology and Audiology Board, they confirmed that her petition to have her license renewed was denied, and that as far as they were concerned she no longer had permission to call herself a speech therapist under Californian law. They wouldn't give me any other details over the phone but very kindly faxed through the judgement in her case.

Yet again I was floored, as the fax snaked it's way though my home, (I'm still working with a trusty but prehistoric thermal paper one), reading the pages upside down, words like fraud, falsely using the initials Ph.D after her name, left me reeling. Then it came the final killer sentence that has haunted me ever since....

"The Board remains concerned that if the petitioner were reinstated, the public's safety would be in jeopardy."

So there you have it folks, Enable Ireland had given a full time job, paid for by our tax payers' money to someone who was considered to be a threat to public safety in California. Doesn't that make you feel really secure about where kids with special needs get treatment in this country?

I'll let you all digest that little nugget before I catalogue the appalling reaction we got from Enable Ireland.

Cheers,
Ann

The Last Straw

Hi All,

I've been trying to compose this post for a very long time, mulling it over, worrying about going public. We have been brutalised so much by the system that we seem to have become de-sensitized to all the wrongs that are being committed. Sometimes it seems like we're completely out of step with the rest of the world, when we complain, people look at us like we are aliens and give us the "that's just the way it is" speech. This last week has been a new low which I haven't even digested enough yet to write about. I don't quite know where to start on this so bear with me yet again if I am rambling, as I feel like I have just wandered dazed and confused with a still bleeding head injury from a train wreck .

I'll have to go back as far as last March to give you the full picture, I am ashamed to admit that at the time, I was afraid to mention this particular incident as I feared going public would some how impact badly on Rory's care. At that stage, we still hadn't got our service statement or any confirmation of access to services. During the whole fiasco over the missing Enable Ireland Speech Therapist and the scramble to find another to assess Rory under the statutory time frame, I emailed his royal highness Prof Brendan Drum, CEO of the Health Services Executive. In his former incarnation as a lowly paediatric consultant he had reason to see our boy wonder when he was in Crumlin Hospital. (Another period best forgotten, trust me!)

My email, was succinct, I curbed my normal ramblings, I respectfully reminded him of his review of our son's condition in 2004, mentioned all his former colleagues who had treated Rory so skillfully and I asked him why all this expensive treatment was now being put at risk by the lack of Speech Therapy services in the west. I pressed send and waited for a reply, I waited and I am still waiting. Call me old fashioned, but now, a full 5 months hence, I would be inclined to describe the lack of even an acknowledgement, a tad rude. However, out of the blue, in mid April, what can only be described as an incendiary device landed in my in box. And this is where it gets really nasty, you may want to pause for refreshment or fortification before you read any further.

Contaminating my email account, I found a missive so full of spite and veiled threats, that I was left reeling for days. Even now as I type, I can feel my heart rate increase. A local manager, who is charged with overseeing services of the caring profession to the weakest and most vulnerable in our community, saw fit to write in response to us having the temerity to contact Our Lord The Most High Brendan Drum. She reminded us of how she was well aware of our son, and proceeded to detail exactly how much our son had cost her over the years we spent on jolly jaunts to Dublin 3 days a week for dialysis. We were given the breakdown of nursing care, the enormous cost, and most importantly, lest we forget, the fact that all of this was in the form of a 'grant'. Yes readers, a grant, not a right to travel to Dublin for life saving treatment, folks this was a grant, that was within her gift to bestow or take away. We had displeased this all powerful manager by going to her boss with an insolent inquiry about a minor issue like Speech Therapy. We had made her look less than all seeing all knowing among the big chiefs in Dublin, so we must be punished. We must be reminded of who is in charge here, we must be reminded of the 'grant' nature of our support services and in these less prosperous times, this most beneficial bestowal may dry up! There then followed the usual detailed list of the standard chain of letters and reports about that expensive upstart, our son, . Like every one else on the list, we would get speech therapy when they were good and ready to provide it. Who did we think we were with our tales of kidney rejection thinking we could jump the queue?

So let us remember here folks, that our children with special needs, medical, physical or intellectual, who live outside the greater Dublin metropolitan area, are not entitled to support when they have to leave their communities for treatment. They may, if their parents doff their caps and speak very nicely to those very important local managers, be granted little gifts from time to time but otherwise they can just go and whistle for it!

I have to admit, I wept for days. There it was, in black and white, our miracle son, his father's gift of a kidney, reduced to being referred to as a drain on local resources. What can you say in the face of such inhumanity? I have re-read that letter only once or twice, as it is too hurtful, but I have yet to find a shred of any caring in it. But then, that's the secret to running a Community Care service, it is of the utmost importance that you hire managers who don't care. Otherwise the whole enterprise would go to pot, and people might actually get a service.

Alas, I have let that woman silence me, because I was worn out, sick with worry and afraid for the repercussions that would be meted out on my son. This has not sat well with me. Then Enable Ireland hired a Speech Therapist, and all hell broke loose, I am still processing that particular collision. Tune in next time for a full report on that insane incident, I think you've all had enough gore for one day.

The struggle goes on and gets worse.
Cheers,
Ann

Another Small Victory

Hi All,

I am pleased to announce yet another small victory - we have finally secured the services of a Speech and Language Therapist!! I know, it takes a while to sink in but there you have it. After a mere 4 years, we have finally made it into the priviliged inner circle of those who get therapy! Instead of any sense of achievement, I just feel drained and confused. Why did it have to be so hard? Why has there been such a scandalous waste of Rory's time and our money? All I can hope now is that we will actually see some progress.

Fortunately the therapist who carried out our needs assessment has also been 'allowed' to give us a service but apparently we're not supposed to tell anyone so keep it to yourselves otherwise every Tom, Dick and Harry could think they were entitled to it!! Honestly, the longer I battle with this insane monolith that is the HSE, the less I understand its logic. For once, words fail me.

Treatment started last week with the next appointment scheduled for next Tue and following at weekly intervals from then on. I think I'm too exasperated to appreciate it.

Cheers,
Ann

Suffering the System

Hi All,

Please excuse another lengthy silence - I know some of you worry when there is no news. No need; we are all fine and still talking to each other! It's an extremely busy time getting to all of these appointments for Rory's disability needs assessment. It is also probably the most stressful experience to date for me, in all the years we have been dealing with Rory's health needs. The process in painfully slow, it doesn't seem to follow any chronological order. I don't feel like we are systematically working our way through any issues here, what's assessed this week is absolutely the same as what was assessed last week and there is certainly no joined up thinking going on between those who are doing the assessing. I even have to endure questions from one therapist asking me about the status of assessment being carried out by one of their colleagues, as clearly no one seems to be talking to anyone here. It's like dealing with the Fawlty Towers approach to child therapy!

I feel completely deflated by the whole ordeal, I can't believe I have been fighting so long to be met with this kind of "make it up as we go along "type of approach to treating Rory's developmental delay. Naturally, I've been informing myself on what happens elsewhere worldwide in these situations, and it is pretty much universally accepted that kids with a history like Rory's need a multi disciplinary team approach where everyone sings from the same hymn sheet. Unfortunately, this is a cultural impossibility within the Irish community health care system, where the mission statement is never to let the right hand know what the left is up to, and most importantly never put patient care before the preservation of the system. The system is an immovable feast of fear, frustration and frantic red tape where the passing the buck is an art form and fudging the issue is the key to survival. It is a constant source of amazement to me how these people actually manage to get up in the morning.

I will continue this process to the bitter end, because a) the end is in sight, and b) I have no choice, we can't move forward without a statement of need. This prized piece of paper will be complete by the end of May - by which time I will be already incarcerated in a home for the mentally bewildered! Meanwhile we continue to work on Rory's oral aversion ourselves with the help of an amazing Speech Therapist who we see privately. I dread to think of where Rory would be now if we hadn't gone down this route. We are seeing improvements everyday, he is willing to challenge himself more and more, becoming braver with each passing day. Today he sat with us for a meal, he didn't eat anything but he was happy to play with our cutlery and didn't have a complete melt down when he spilled spaghetti on his jumper. He quietly picked it off and dropped it in his dish. Seeing him able to actually handle food without becoming stressed gives us great hope.

I am convinced that Rory's aversion is rooted in issues of trust and control. He has never felt hunger, never had to engage with others to have that hunger need met. To cap it all, anything that came near his face was, at best, deeply unpleasant and at worst, downright painful. We need to work around his feeding regime, making sure his kidney gets the daily fluid allowance it requires but also allowing him time to feel hunger. Then we need to educate him that food is good and not something to be feared. But we have to follow his lead on this, he must choose to eat we cannot force him. He needs the support of a very experienced team to encourage him to make this most basic of life choices. I have yet to find this team.

I am optimistic for Rory's future, he will eventually make that choice, it's just so difficult when meeting his needs is such a struggle within this insane, cruel excuse we have for a health system. It shouldn't have to be this hard.

Cheers,
Ann

A Rare Speech Therapist Siting

Hi All,

Well, I'm happy to report that I now know what the local community care speech therapy department looks like. Imagine, after 4 years I was finally admitted to those hallowed halls, I even met with a speech therapist who told me she had experience treating aversive eaters!! I was stunned, amazed and even awed, as I had been led to believe that people with her skills didn't exist in this area. Mind you, her office was at the end of a stuffy corridor in a portocabin,so it is entirely possible that HSE local management had just simply forgotten she was there! Like all those letters of complaint I've written over the past 4 years, she too had been sucked up into the ether of the esoteric administration of our health service. I bet if one were to do a thorough inventory of all the corridors in all the cabins run by the HSE, all sorts of treasures would be found; a cure for cancer, cost saving measures that treated patients with dignity, orthotic shoes for the under 5's, neurologists, ambulances and even detailed directions out of Angola signed by a certain B. Cowen. It's like the flipping Narnia wardrobe in there!

Reassured that she wasn't a figment of my overactive imagination, I began yet again to detail my son's complicated history. I should really just type up a flyer about it as I have delivered that speech over 100 times so far this year alone! She responded well, took detailed notes and generally seemed to be quite sensible, a rare gift these days, in my experience. We have arranged further dates for her to continue her assessment of Rory's needs with a view to preparing his service statement by the end of May. But no, she has no idea who will be delivering the services to Rory. Rumour has it that Enable Ireland have actually offered a full time post to a Speech Therapist but no one can confirm or deny that he or she has any experience with eating aversion. So even though she herself may be the best qualified person for the job, Rory will be tied into the services of Enable Ireland even if their new speech therapist hasn't a clue how to treat him. Don't you just love a good old fashioned bureaucracy?- the mind numbing nonsense surrounds you like a comfort blanket that's been infested with fleas!

This week sees us battling a further barrage of tests, occupational therapy tomorrow, with physio and psychology following later in the week. At times I feel like the blood is quite literally being sucked from my veins by this process! On a more positive note though we did manage to go over a week without going to a hospital that's Rory's new personal best, 10 days cold turkey since his last discharge! His new found freedom has given him lots more time to get up to all sorts of mischief, like switching off the telly during the last furlong of the Grand National when all present were nervously clutching betting slips bearing the names of the first second and third contenders!! He was lucky to escape that one with his life! Transmission was restored in time for the action replay, the winnings were belatedly confirmed and then duly celebrated.

So I guess the only up date on this on going battle is watch this space for further details!

lets remember folks it's 5 months on since Rory was given a kidney from his dad and he still can't eat.

Cheers,
Ann

Small Victories

Hi All,

I'm happy to announce progress on the footwear front!! The obviously flush footwear department of our local HSE Community Care has rubber stamped the purchase of special shoes for our boy's feet! Of course now we wait, as they have to send someone out to actually buy them! I promise photos in 3D when or if they arrive. Although I can't help feeling some kind of residual survivor's guilt for those who may not have been in the inner flush circle on this round Imelda Marcos type indulgent spending! If you know anyone in that situation, still waiting for approval for shoes, please pass on our messages of support.

The other break through, is in the Speech Therapy department! Lets not get ahead of ourselves here folks, we haven't actually been given any service, but we have been given a date for an Assessment of Need. This will merely outline our urgent need for the services of a Speech Therapist, but will then refer us to yet another waiting list, due to the lack of services available in our area! Are you all still with me? We have the privilege of meeting her on Friday, I promise to report in detail on that one, it should prove very interesting.

On a much more tangibly positive note though, I'm happy to report that we are now half way through our first week in almost 4 years without setting foot inside Temple St Hospital! Imagine, our first week since Aug 04 that we have not been in Dublin, we don't quite know what to do with ourselves. This momentous milestone is due to his recent blood results being very good and also to the fact that we said goodbye to his Central Venous Catheter last Wednesday.

The Central Venous Catheter has literally been his life line since starting on haemodialysis in Sept 04. Sited in one of the veins near the heart, it is the magic piece of plastic which gave the team access to Rory's blood for dialysis. Before the transplant, the continued good function of this tube marked the miraculous bridge between life and death for Rory. It had served him very well and really without incident since it was inserted. However, we were not sorry to see it go! No room for sentimentality in this house! Kids who have these can't have baths or swim as this line must be kept dry. We're still waiting for the opinion of Rory's transplant surgeon on him being allowed to have a shower due to his unorthodox urinary plumbing works.

Rory is also back at his Montessori school two days a week. It's such a joy to watch him skip in the door with all of his classmates. He's making slow but steady progress and was even persuaded to sample some yogurt by his teacher! He spat it out before it even hit his tongue, while one of his buddies sagely pronounced that he mustn't have liked the taste! Still he tried it and he didn't vomit or gag like he used to, so I'm officially classifying that as a victory also!

It's fitting, during this Organ Donor Awareness Week, to concentrate on the little victories. If Rory's story has moved you, please consider getting a Donor Card but also make sure you discuss your wishes with your family.

Lets remember here folks, that thanks to an amazing gift from his Dad, a little boy who was born without kidneys is now running round and tasting yogurt!

Cheers,
Ann

That Parallel Universe I promised.

Hi All,

Did you ever start something and half way through,when the process is so thoroughly turgid you have one of those "what was I thinking?" moments. Well I'm slap bang in the middle of one of those moments - like just past the half way point in the dark tunnel where you have no choice but to keep going. Such is life in the middle of the latest HSE bureaucratic beauty - known as The Assessment of Need. At this point in the journey, my own personal needs could be met fairly quickly and effectively by a week in the Sun enjoying those drinks topped with paper umbrellas, or a good hypnotist telling me I've just woken from a session and the last 3 months were all a dream!

But alas I'm stuck here grappling with the immobile Gorilla that is the Assessment of Need. This little treasure was obviously cooked up by our country's best and brightest public servants with only mayhem on their minds. It even sounds positively progressive on paper. It's all there in black and white in the Disability Act 2005. Under this marvel of modern democracy, children under 5 years of age are entitled to an independent assessment of their health and educational needs arising from their disability. See, I told you it sounded good on paper. Once assessed, your child will receive a service statement - but you see, now this is where it begins to resemble a dodgy second hand car dealership. Your child is then legally entitled to the services laid out in that statement - now, how good does that sound? Except there's a but, and this is a really big one, your child is only entitled to services where available. Those two words 'where' and 'available' those harmless little collections of vowels and consonants are capable of making a complete nonsense of everything that precedes them. You go through months of assessment, 6 long months in total under the Act, to be given a statement of your child's needs but no provision of services. I warned you it was a beauty!

There are also some lovely twists along the way. For example, Rory, as you are by now, quite sick of hearing, has some quite urgent speech and language therapy needs. You don't really need to be a trained assessor to spot that one. As you also know, Enable Ireland have no speech therapist in Galway, so there is no one to carry out that part of his assessment. Hold on to your frontal lobes here - as you may experience some throbbing shortly. I innocently enquired about paying privately for this part of the assessment. Pure sacrilege on my part of course! This assessment may only be carried out by a private therapist where there is a clear case of urgent need and no one qualified within the public sector to carry it out. Apparently Rory doesn't yet fit these criteria,(go figure that one), consequently, a speech therapist must be found within the next 4 wks to assess him or they will be in breach of the act.

Nothing like the possible breach of an old act to focus the mind of a public servant! I received a call from the local Speech Therapy services manager last week. I had spoken to her last summer before I ended up at the office of the Ombudsman for Children. She was at pains to point out her safety concerns about offering Rory a service - what if he gagged? What if he can't swallow? I explained to her again, as I had also done in detail last summer, that there was nothing physically stopping him from eating - this was an acquired defensive behaviour quite common among kids who have been tube fed from birth. The problem was we couldn't get anything into his mouth! Still she felt uneasy and had even phoned Temple St. to see if they could carry out a special test under control conditions. I politely asked what exactly was involved in the test. "Oh he'll just have to swallow something and it will be filmed going down his oesophagus" she chirped. "But we can't get him to swallow anything" I wailed "that's why he needs Speech Therapy!" Her reply was an abrupt 'we'll get back to you.'

Is it just me, or is this a parallel universe populated by people who's minds are wired in a completely different manner to the rest of us poor mortals?

But lets remember here folks, while the HSE continues to prevaricate, there is a little boy who got a kidney from his dad who still can't eat.

Cheers,
Ann

Swimming the Atlantic in Treacle

Hi All,

Are you ready for your next installment? Well here goes, after that investigation which was carried out with surgical precision, -( how else would they have traced all those lost letters?), on Sept. 27th last, we miraculously arrived at the top of the waiting list in Enable Ireland. Champagne corks popped - metaphorically at least as by this time we were up to our what's its in stress with the living related transplant only weeks away.

A social worker was dispatched to our humble abode for the requisite tea and sympathy chat so that a report could be written. So far, so familiar. A very neatly typed report arrived shortly afterwards giving full details of Rory's needs, medical history and stating that we would be admitted for Occupational, Speech and Language therapy but that also there would be input from the in house psychology team ( to review Rory's developmental delay) and that physiotherapy would be offered when a slot became available. Happy days, finally things seem to be sitting into place, and what with a kidney arriving shortly we were in danger of having a happily ever after moment here!

So we merrily went about our business, donating kidneys and generally getting on with the business of daily life. We were blissfully at one with the universe, safe in the knowledge that we had all the systems in place to ensure the best possible outcome for the new kidney. We were discharged from hospital - celebrated Christmas among our nearest and dearest, gave thanks for the amazing second chance at life that our son had been given. Nursed Niall back to health and generally basked in the enormity of what had just happened to our family.

January came - and with it the usual winter bugs and doses so we found ourselves back in hospital for much of that month. I began to get a little frustrated as progress seemed to have reversed so I decided that we should maybe speed up this speech therapy lark. The fact that Rory was still not eating was seriously beginning to complicate our lives. The balance of the anti-rejection drugs was still like playing pharmaceutical Russian Roulette and his lack of normal dietary intake was playing havoc with his sodium balance. This kid needed to start eating now!

With this in mind, I flicked into responsible parent mode again and rang Enable Ireland to arrange a home visit as Rory was still not allowed out in public due to the imuno-suppression.
The feeling I experienced during that phone call will follow me to the grave. I very politely asked to speak to the Speech Therapist, to be told 'Oh her, she resigned before Christmas" "and nobody thought to tell me"? I enquired. A more senior member of staff was called for clearly, and I was assured I would be contacted without delay. Still reeling when the phone rang, I felt surely this was just a mere glitch and of course there are systems in place for events such as this. I explained the situation and was told - "Oh sure you'd have to go to Australia to see her"
So that was it, the plan B for just this type of situation - we'd have to move to Australia - I'm so glad he pointed that one out - as the mood I was in didn't really lend itself to such forward planning! Needless to say the next few days saw what can only be described as a full and frank exchange of views between myself and Enable Ireland.

I pointed out (rather helpfully I thought) that since they had no Speech Therapist they were not now spending their Speech Therapy budget so money could be re-directed to hire in private therapists. The logic of this seemed to be way beyond the bounds of what was bureaucratically possible - the repercussions were un-thinkable! No, no, we couldn't hear of anything as logical as that - this is the public service after all and there'll be no mention of that dirty private word here. Anyway it was completely out of their hands you see it was all the fault of ....... yes, our old foe the HSE. We would be referred to one of their own hospital speech therapists - a therapist was found so end of problem. You would think so wouldn't you? Except, the suggested therapist had already seen Rory in 2004 and deemed him outside her scope of practice - on foot of this we had been referred to Enable Ireland. Are you still with me here? Let me put it simply: in 2004 she deemed Rory to be the honors paper and that a multi disciplinary team approach was necessary - the type which is allegedly only available in Enable Ireland! Now Enable Ireland were sending us back to her in a great hand washing exercise, the like of which, would surely not be found anywhere else in the civilised world!

I do often wonder about that phrase 'public service" - the waiting lists to get in would be the envy of many an exclusive club - thus rendering them, well, not very public really and here we were, actually in the inner sanctum, and we still hadn't gotten any service. So it is a bit of an oxymoron then really don't you think? Maybe they should re name it the Elite Disservice or the Uncivil Disservice? - Suggestions on a post card please!

I returned to the warmth of Temple St and asked what to do. They were suitably outraged - a rather wise stance on their part considering my, by now, murderous demeanor. A letter from our consultant to the HSE was dispatched post haste, stating in no uncertain terms that without Speech Therapy, there was a real threat to a living transplanted kidney. A pretty urgent letter you would think. He even followed it up with a reminder two weeks later - more little urgent rubber stamps maybe? No, lets remember people this is the Public Service - where the cardinal rule appears to be don't deal with the public and whatever you do, don't give them any service! That all happened in January, I have yet to see a reply.

Lets just bear in mind folks that throughout this ridiculous exercise in hand wringing and inaction, there was a little boy who had just got a kidney from his dad and who still couldn't eat.

The saga continues......
Cheers
Ann