Saturday, 25 April 2009

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 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?


Saturday, 18 April 2009

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.


Wednesday, 8 April 2009

Reasons To Be Cheerful.....




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!