Merry Christmas

Merry Christmas and a very happy New Year from Boy wonder, Jess, Chicken Lickin and the other kidney!

All My Birthdays and Christmases!

I'm still in shock and maybe it's because I didn't see it with my own eyes, so I still can't quite believe it. But I am more than elated to announce that boy wonder ate (yes folks you read right, 'ate' as in consumed via his own mouth)... five half tea spoons of petit filou yogurt at school today!

This may be a flash in the pan (or in this case the 'yogurt pot') but it could also be the start of something truly miraculous. I don't dare to hope...

Now if that doesn't cheer you up, I don't know what will.

Cheers

Ann

The Translator Resigns

Well, in the titanic battle that is Barrett vs The services: round # 603 went to Rory! He has just been approved for 3 resource teaching hours a week. It only took three months, 60 phone calls, a small woodland dell worth of paper, a large lump of expletives and a crash course in relaxation techniques. We were lucky this time to escape with only minor bruising and some superficial wounds.

The outcome of Barrett vs Crumlin Hospital is less clear however. A week after my last post, and completely out of the blue, we received another letter reverting our appointment back from Jan. 27 to the original date - Nov. 18. Confused? I hear ya! Needless to say, the other kidney had re-arranged work and could no longer make it on Nov 18; the new correspondence only giving us 48 hours' notice. So, we will now re-revert (if you follow me) to the January appointment. I'm feeling both battered and baffled.

Another notable notch in our battle belt was recorded last week; it appears our services have been transferred out of Enable Ireland. Steady on! It's early days, and I fully expect a mega misunderstanding before we so much as get within a whimper of another ologist, but it's these little victories that get me out of bed on these dark, damp mornings!

If and when, a therapist or ologist appears out of the murky mist of the HSE West, trust me, you'll be the first to hear about it!

Translation? I give up!

Cheers,

Ann

Reasons to be Grateful

I can't believe it's two years since this day; and this one. The anniversary of the transplant that kicked off this blog is being celebrated in style in our house. To all of you who have walked this road with us, we say: thank you, from the bottom of our remaining internal organs!

Please know that you have played a fundamental role in our survival and success. So raise a glass to organ donors everywhere, but in this week of rememberence, let us also think of those who have not had our good fortune.

Thank you for sticking with us: it has made a really big difference in our lives.

Cheers, (she said raising her glass..)

Ann

Lost in Translation.

Why must I stupidly insist on using norms from the real world, when experience has shown me that the rules on planet HSE are very different? Whether from innocence, indolence or ignorance I'm not sure, but I repeatedly fail to decipher the secret scripture of the health service. For example: when is an appointment not an appointment? I've recklessly been walking around all these years, using various reputable dictionaries as my point of reference when I didn't understand the meanings of certain words. For instance, with a word like appointment: I understand it to be a noun meaning an arrangement to meet at a certain time at a certain place. Please feel free to correct me if I'm mistaken here.

With this in mind I had cause recently to ring Crumlin Children's Hospital, (ah yes, my old Nemesis), to confirm a pre-op plumbing appointment for Nov. 18. After tearing through some telecommunication traps, I eventually happened on a fellow human being at the other end of the line; a rarity these days. After barking a request for Rory's rank and serial number, she confirmed his appointment for said date, time and place. Great, now I had it in writing with a follow up phone confirmation. I figured I was pretty safe in the assumption that, I indeed, did have, an appointment. However, less than 17 hours later, a letter arrives: changing that appointment. Confused? I know I was.

OK, so here's the thing: did my phone call set off a whole chain reaction which led to alteration of the appointment? In which case, wow, in under 17 hours, they work fast! I think you'll agree, given past experience, that is most unlikely. Or, is there, somewhere buried in the bowels of Crumlin hospital, a left hand, who surreptitiously changes everything that the right hand, above ground, is doing? Apparently, I now have an appointment for 27 January next, which by the way, will be almost 12 months after the appointment was first requested. Could this be the case? It might be; but then, I'm too terrified to ring and confirm it.

Recently, Rory received a diagnosis of Dispraxia from his Occupational Therapist. With such a diagnosis, he is entitled to have three hours a week, one to one, extra resource teaching in his school, to ensure he doesn't fall behind his class mates. The report was sent to the National Council For Special Education (NCSC), by all accounts: a most reputable Quango. The reply was another exercise in definition dodging. When is Dispraxia not Dispraxia? Well, apparently, in NCSCeese: ' when it doesn't impact on your education in school'. I didn't realise you could successfully complete an education when your brain had major problems telling your body what to do. Seemingly, under the new NCSC definition: Dispraxia's a doddle. For all they know; he may only have a touch of Dispraxia, or the OT was having an off day, when she wrote the report. A diagnosis, after all, might not mean he actually has the condition - in NCSCeese, so to speak.

In an effort to comply with a whole new public service dictionary, we will now occupy more scarce school time and resources filling out more forms and reports, in order to re-define an established condition, with a view to meeting the criteria of the Irish system. Are you still with me here? Exhausting, but brilliant: you see without this duplication of duties, you could never justify the numbers employed to stop children getting access to their entitlements. You couldn't make this stuff up; but, obviously, they can.

To the HSE and the Dept. of Education: I bow to your bureaucratic brilliance. I am in awe of your awfulness. I am humbled by your lack of humanity and intelligence. It is reassuring to know, in these days of fiscal frugality; that you are doing your utmost to keep meagre resources tied up in paying mad Mandarins, rather than furthering children's health and welfare.

Some day, when I finally learn to speak fluent HSEese, I might be able to make sense of all this: but until then, I remain, confused.

Cheers,

Ann

The Wisdom of Youth

I bundled these buzzing beauties off to school in fancy dress today. All dressed up for the mid term break party, Jess in her gothic glory and Rory as a Batman rip off!

As we walked to school, Jess mused aloud about how the other boys in Rory's class would be dressed. "I'll bet they all come as superheroes" She pronounced with some authority. Sensing the question forming on my lips, she then quickly expounded: "They're always superheroes until they get to first class; then they turn into baddies!"

There wasn't really much I could add to her theory, it was, in her eyes, complete. Who am I to argue with a 9 year old sage?

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