Enough

It's been a draining week. Listening to the catalogue of crimes against humanity perpetrated by the Irish state and religious orders has been very disturbing. What has caused me most pain is the response of the HSE, assuring us that it can't possibly happen now as there are safeguards in place.

This is not true. These so called safeguards, of which they speak, consist of a voluntary code of practice called The Children First Guidelines. They have no legal basis and are not uniformly implemented across the sate.

Last summer my son was put at risk by a dangerous therapist working for Enable Ireland, an organisation which claims to adhere to these safeguards. When the risk was exposed; they lied, bullied and hired very expensive legal counsel. No action was taken. Although they have been proven to be in breach of Children First Guidelines, there is no sanction available for this breach. I have no where to go with my complaint.

Last week, just prior to the publication of the Ryan report on Institutionalised child abuse in Ireland, they sent me yet another waste of paper in response to their negligence towards my vulnerable son. I am no longer prepared to engage in a game of paper ping pong with people who do not share a decent moral code. This has to stop.

I've had enough, so I wrote this letter:

Director of Services,
Enable Ireland
Seamus Quirke Road
Newcastle
Galway


May 25th 2009,

Dear Clare,

I was dismayed to receive a copy of your ‘Protocol for the management of suspected child abuse’ on May 8th last.

The risk, to which my son was exposed, by the lack of adherence to the Children First Guidelines during the dismissal of your speech therapist, has already been established. The time for sending me this document has long since past.

In a week which has seen the publication of the Ryan report on institutional child abuse in this country, it is deeply distressing for me, as a parent, to see that organisations charged with child welfare are still failing our most vulnerable.

Please stop prevaricating, I want you to carry out a full disciplinary hearing on why this was allowed to happen to my son, I want to know exactly how many other children were put at risk. I want cast iron, binding procedures put in place that will ensure this will never happen again.

This is a moral and ethical issue, please stop hiding behind bureaucracy and be big enough to take a stand on child welfare.

I would be grateful if any further correspondence from you detailed only action, not excuses.

Yours sincerely,



I doubt I will get a meaningful response.

Cheers,

Ann

MacGyver Moments

Rory's personal plumbing can best be described as unorthodox. He passes urine through a little slit in his abdomen. For a lad that never peed until way past his 4th birthday, we consider it a major achievement - it could come out of worse places!

Management of this uber alternative u-bend, is pretty straight forward, but it does require a certain level of inventiveness. During the day, we slip a pad into his nappy to collect the constant drip. This pad is a classic of the maternal necessity, school of invention. Pad's, of the like required by our lad, are not what you would call, an over the counter item. They are the product of much discussion, trial and error. Thanks to the bright sparks in Temple St., we happened on our current model; a new born nappy cut in half with a strip of Mepore tape stuck across the top.

I tend to make them in dozen batches, usually while watching telly in the evening. It's a real Blue Peter experience, scissors, sticky tape - the whole kit. I have it off to a fine art now and can rustle up a batch before the tea is even drawn! The pad usually lasts just shy of about two hours before the telltale wet patch becomes visible on his shirt.

At night we attach a bag with a 2 litre capacity, although a late starter, he now pees like a pro.There is no road map for urine routes such as his. He's a one off. A bit like speeding up the M1 before the official opening, without a sat nav. Each new stage, has us scratching our collective heads.

We've arrived at an un-signposted cross roads. The tube, his almost new ureter, which conveys the urine from his reconditioned second hand kidney, is also a miracle of recycling. This ureter came with the kidney and, well, although it came from one former, carefulish owner, it has been around a couple of decades longer than it's current owner. In short, and really no pun intended here, it is not going to grow with our bolting boy. Here's where the law's of physics are very visible, as he grows the ureter is stretched, and as this tube stretches, the hole at the end gets narrower.

We've been monitoring this for a while, we even had the opening surgically dilated in Crumlin back in February. After this procedure, I was granted yet another unenviable medical task; that of stretching it daily. Now, I've learned some procedures, since Rory was born, many were not pleasant; injecting EPO into a 3 month old thigh, passing NG tubes, but I did them as they were keeping my boy wonder alive. But, I have to fess up here and admit that stretching a urostomy with, what looks, for all the world, like a stainless steel crochet hook; is, put mildly, my least favourite procedure to date! I often wonder, if years from now, he'll fill expensive hours of therapy with memories of his mother plunging stainless steel hooks into his stomach! Well at least it'll give him something colourful to recount!

I noticed last week that my daily stretchings were becoming a much more difficult affair. The opening was getting visibly smaller. Now as you can imagine, I watch urine flow down his plastic bag at night, in the same way that a new mother neurotically checks that her new born is still breathing. An interruption of flow is just too horrifying to even contemplate, so it was with a heavy heart that I contacted the hospital on Friday morning.

I had prepared myself to leg it to Dublin. Luckily, the other kidney was not away on one of his very frequent 3 week work trips abroad. So on the face of it, a Friday dash to Dublin was completely manageable. Jess could stay with her Dad, while boy wonder and myself crossed the country. The phone calls back and forth were promising, maybe we could hold off on the dash. A variety of surgeons and ologists were consulted, and finally arrived at the solution of getting a smaller crochet hook! Simple yet brilliant. For the sake of expediency, it was suggested that I try to borrow one from Galway hospital.

I phoned the always helpful Paeds dept. I was greeted with the usual warmth, concern and large doses of common sense. The nurse who answered, gave me all the relevant contact details, but just as we were winding down the conversation, she asked if the implement in question was available in Temple St. When I confirmed that was the case, she suggested I get them to put one on a train to Galway immediately as it would be a lot quicker than trying to track one down this side of the Shannon. I was instantly struck by the genius of the suggestion.

So, our sainted consultant in Temple St procured the implement, and I called our former dialysis taxi driver to pick it up and deliver to Heuston station. Fortunately, these two links in the chain are made of solid gold. The consultant personally packed up his two preferred options, and the taxi driver charged through lunch time traffic to meet the 14h35 to Galway.

She arrived on time, only to find a sign proclaiming that Fastrack had ceased trading! Now, way back in the days when I had a career, Irish Rail's courier service, Fastrack was my very flexible friend. I could practically recite the timetable by heart. How had this bastion of Irish communication, the purveyor of all things provincial, been closed without my knowledge? I was dumbfounded; now what?

The taxi driver said she would investigate further. The next phone call, was a hoot! I have no idea what she said, threatened or promised, but all I know, is that the package was thrust into the hands of the train driver who personally guaranteed to deliver it into the hands of the other kidney in Galway station! I love it when the old Ireland shines through all the shallow gloss of progress!

By 17h22 the new smaller medical thingamagiggy was in my hands. All it took was a further call to the consultant to compare size with our current incumbent and the job was oxo!

MacGyver would have been proud.

Cheers,

Ann

The Rogue's Progress

For some reason, I have a really vivid recollection of last year's May bank holiday weekend. I remember the weather was beautiful, we spent most of it in the garden pottering. Rory was battling a cold and I was sure we wouldn't see out the weekend without a transfer to Temple St.I was wrong, he beat the bug. It was the first time he shook off a dose on his own, a big milestone. I really began to readjust my radars, his new kidney was changing the rules of our lives in so many ways, we almost had to learn a whole new script. We were still travelling to Dublin once or twice a week. I had been trained to access his central line and take blood myself. A nerve racking procedure, inducing severe bouts of jelly legs and much dryness of my throat, but it's amazing what you're prepared to do to avoid another regular trip to Dublin!

This year, the weather failed to delight, but Rory manged to shine incandescently! While the sky was so thick with rain, it was literally hanging into the ditch, Rory sang his heart out and promised us all that once the rain stopped, we'd go to the playground. His joy at spending time with his family barely contained. Having stripped the sofa of all cushions, he and Jess bounced rolled, giggled and tumbled their way from Friday to Monday. Jess wisely remarked that; " you don't have to be cracked to live in our house; but it helps!"

A conversation through the comments of my last post made me realise, I have been doing it again; only posting about boy wonder when I have a complaint about the system. So today I'm taking a moment to revel in how far we've come on this most exciting of journeys.

I can't even begin to detail the progress of this last year there has been so much. So much, for which we are incapable of expressing the immensity of our gratitude. Maybe these few photos will give you a glimpse of the the Rogue's wondrous progress.

Cheers,

Ann

Moving from the land of the unwell

Some eminent academic once described living with long term illness as 'migrating to the land of the unwell'. Very apt indeed. As a family, we've been residents of the land of the unwell for nearly 6 years now. It's a funny place, the land of the unwell, very isolated and with a very strange social order. Like any land, there are some amazing residents there, but there are also some who are not really what you would call good neighbours.

Making the transition from the land of the unwell is not that simple. For a start one has to be, in short, well. We're not totally well yet but we're not unwell either. We don't have a diagnosed disability as such, but we do have some catching up to do. So that places us in limbo, somewhere between the land of the unwell and the land of the well. When you live in this limbo, bureaucracies don't quite know how to deal with you.

Take boy wonder for example, he's getting ready for mainstream school in September. This will not be possible without a Special Needs Assistant (SNA) and some intensive resource teaching hours. The SNA will not be an issue as he is incontinent and still doesn't eat, so it's a fairly straight forward medical requirement. The resource hours, on the other hand, are a bit more tricky. To qualify, he must have a permanent physical disability. We could say that as a result of a congenital defect, in his case, the absence of kidneys, he has a disability that is profound but hopefully not permanent.

However, I must supply proof. But there's a glitch. Due to a fundamental disagreement,I can't supply the very nice people in the NCSE (National Council For Special Education) with any of his reports from his Needs Assessment. The first problem is that his psychology report maintains that he has an IQ of less than 70. The reason, our learned friend, the Enable Ireland psychologist, came to this rather bizarre conclusion, is that most of the tests he carried out on Rory, related to food and eating. Having never eaten in his life, Rory simply refused to engage, ergo less than normal IQ. Brilliant.

So, I asked for a second opinion, almost a year ago now, as is my legal right under that bad joke that passes for legislation, the Disability Act 2005. In the meantime, as you may recall, I became involved in a battle with Enable Ireland over their lack of a child protection policy when screening staff.

Mysteriously my second opinion never materialises.

So now, in order to get my child the support he needs in school, I am dealing with a report that says mainstream school could never be an option for a boy with such a low IQ. Meanwhile my son is thriving in an Irish language preschool handling bilingualism with the kind of panache that only kids can display.

He doesn't have a diagnosis, just a suspicion by a muppet with a psychology degree but no common sense. He can't be assessed for ASD or any other form of intellectual disability because he is in Enable Ireland, they only do physical disability. Child and Adolescent Mental Health Services (CAHMS) won't touch him because of his psychology report. I can't access summer tuition for him because he doesn't have a diagnosis. I can't get a diagnosis because according to his psychology report, he is a human vegetable. Are you still with me?

I got thick last week and threatened legal action. I have just been informed that, I will have a second opinion within 10 weeks.

Should I call the removal van? Are we on our way?

Cheers,
Ann

Empty Nest

I'd been trying really hard not to faff, in fact I'd been positively hands off chez Mme Robin. So bleeding hands of; that I missed the main event! I could kick myself - I should have known the shift from helicopter landlady to absentee was way too drastic, I should have just hovered discretely. You see, more than once over the last week, I had convinced myself that the whole Robin family had been wiped out by a smug cat, new to the neighbourhood. You know the kind, all knowing swagger and bling collars! I was forced to shoo him on many an occasion, as he was lurking far too close to Ms Robin's hood for my liking! So apologies to said smug cat - you may be innocent of this crime but this doesn't mean I have to like you!

Events reached a critical point yesterday afternoon, the chicks were very still - I had my macabre suspicions confirmed by other responsible grown ups. I even had phone counselling from my brother, who's pretty in the know with all things wildlifey. I was rehearsing the "sit down kids, I've got something to tell you..." speech. I was a bundle of stress. My neck was on the point of seizing up completely! Then, just as I was about to reach for the Neurofen, I decided on one last look. I was greeted by 4 beady eyes - the spit of their mother's, with that 'there she is faffing again' look. Oh the relief, I am now immune to Robin reproach, it was a joy to be belittled by them!

I went to bed with a light heart and an easy conscience, full of the promise of the wonderful photos I would take in the morning. So, bright and early today, sufficiently caffeinated and wearing my glasses, I went out with camera poised ready for the award winning shot. There they were, gone! They had upped and left without so much as thank you note. A bitter sweet departure, still it beats being eaten by that smug cat.

Thanks to the wonders of 'tinternet', I am happy to report that there is a much more observant robin room mate out there in cyberspace, and he has even recorded his robin's sojourn with day by day photos. All of which are revealed in technicolour here.

As for me, well, next time I will do better, I promise.

Cheers,
Ann

Reasons To Be Cheerful.....

One,

Two,

Three,




Ok, so I'm no wildlife photographer, but you can still get the idea! Approx. 2 feet from my kitchen door, a robin, clearly showning enormous trust in us, (or with nerves of steel), has decided to make her home in ours! Watching her settle in without so much as an IKEA catalogue to help with the colour palette, has been an inspiration. The kids are enchanted.

The eggs hatched on Sunday, I have no idea when they may fly - Any advice? We feel a huge responsibility to this family; we really want to make sure they get the best start. It's all very lovely, but now I have another family's woes to keep me awake at night. How will she manage in this recession? Will her child benefit be taxed? What about health care? The right schools? It's going to get very crowded in there, will she have the means to trade up to a modest 3 bed semi? No sign of Mr Robin though - will she qualify for lone parents allowance? Do single mothers with 5 kids get mortgages nowadays? Where do robins go for this kind of advice? It's exhausting.

I try to share these concerns with her, sensitively broaching the subject, but she just gives me the look. The one that says; 'I'm in control, stop faffing'.

I'm taking lots of inspiration from this visiting family - they just seem to smile in the face of adversity. What an honour to share our home with such excellent house guests!

Cheers,
Ann

Organ Donor Awareness Week 28th March - 4th April

Given the week that's in it, I thought it might be useful to look at the statistics behind the gift of an organ.

Last year 81 families in Ireland were visited by unspeakable grief with the loss of a loved one. When death came calling, in the throes of their pain, they thought of others; and agreed to organ donation.

Because of their ultimate gift, there are now 136 people leading happy healthy lives with new kidneys, 12 of them also received a pancreas, 58 are thriving with new livers, 4 are celebrating life with new hearts, and 4 are filling their new lungs with great gulps of fresh air. That makes over 202 people, who's lives were saved by 214 donated organs. A further 10 living donors courageously made the gift of a kidney to a family member or loved one. All told that's 212 families who were given a second chance.

I know all about second chances. Our second chance means that we no longer get up at 4.30 am every Monday, Wednesday and Friday to go to Dublin for Dialysis. Our second chance means that we can go on our first ever family holiday. Our second chance means our family doesn't have to be separated by frequent long hospital admissions. Our second chance means that Rory can pee!

While I know a lot about second chances, I also know about loss. On the 13th of July 1988 my sister was mowed down by a drunken driver. We would have liked to have donated her organs but she was killed on impact. It would have helped the chaos of my grief, if her death could have saved a life.

Please think about carrying a Donor Card, and if you do, please make your wishes known to your nearest and dearest.

Cheers,
Ann