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?



steph said...

Jeez! Ann

I'm glad I wasn't around when you got thick ;-)

It's vicious circle, isn't it? These bloody agencies get so tied up in bureaucracy, the patient's needs are completely forgotten. Nobody cares if Rory misses a vital opportunity but Form ZW222 must be completed - Grrr!!!

How well I know that land of limbo. A land where there's no certainty what tomorrow will bring and where only those in the know, understand your position.

Rory's psychology assessment was a joke and he's already proved them wrong. Am I being too cynical by not believing the 10 week promise?

AnnB said...

It's anyone's guess Steph. They better not send me to another muppet though as I fear I may crack, and someone could get hurt this time!!!!

JBBC said...

This quote on living with long term illness as 'migrating to the land of the unwell' reminds me of another similar quote about illness being the night-side of life - "everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

AnnB said...

Hi there JBBC and welcome - I've recently just sent your link to a friend of mine who is now almost 7 years beyond breast cancer. I hope she gets to visit.

Your comment rings so true - hardly amazing then that the same woman; Susan Sontag is also responsible for the land of the unwell metaphor. I have always found her take on life very interesting, but it is her thoughts on illness and death that truly inspire me.

Tommy said...

Tell me, has bitching about the Irish health system for 6 odd months actually helped your cause?

For what it's worth, I'm disabled, I have Cerebral Palsy. I agree that the health system in this country sucks, but jaysus, complaining about it will get you nowhere.

AnnB said...

Hello Tommy and welcome on board.
I hadn't realised that I had been bitching for so long - but then one person's bitching is another person's fight against a poor system. I firmly believe that our current system is such a disaster, precisely because people haven't complained enough. They have just accepted it for years. My way of making sure my son gets the best start in life was to try to change the system, not only for him but for those coming after him. I see that as my responsibility as a parent.

But to answer your question directly, yes, 'bitching' (or formally complaining as I see it) has helped my cause enormously, Because I bitched, a dangerous therapist was dismissed, because I bitched my son now gets services which are improving his quality of life, because I bitched transport services for him improved to attend dialysis, because I bitched we managed to get night time nursing cover to stop us from becoming burnt out. These are just a few of my bitchin' results. I have many more battles to fight - some I will win, and some I will loose. But as long as kids with disability are not getting access to proper care, then I will continue to bitch.

But hopefully I won't have to sacrifice my sense of humour or my ability to enjoy life in the process.

Thanks for visiting.

Tommy said...

Okay, I guess if it helps you get things done, I suppose you should go for it. I mean, I know as much as you about kids and disability, maybe I was wrong, maybe you should bitch.

I just question whether having a blog about it all is such a good idea. Maybe that's it, and if that is the case, my apologies, my comment was poorly phrased.

Speaking of my comment, also, apologies, you have been blogging much longer than 6 months. Miscalculation on my part.

So, yes. If bitching is what is needed to get your child the necessisary, then we should all be doing it.

AnnB said...

To be honest with you Tommy, I have no idea if blogging about this is a good idea or not. This blog started out life to keep family and friends informed during the transplant operation . It has since morphed into what you read today. I suppose, really I was catapulted into a world I didn't even realize existed, with Rory's birth. I was completely shocked by what passed for acceptable service for our kids. I figured, then that, like me, most people didn't know what was going on. I felt it was important to bear witness to tell it like it is.

We have to advocate for our kids, this is the only way I know how.

Our lives are filled with positives, our son has broken all the molds, exceeded all expectations. We have all played a part in this, but mostly he has done it himself by his sheer love of life and will to succeed. My job is to provide him with the tools to do whatever he wants or needs to do.

I'm learning all the time, he is teaching me. The first good start I need to give him is a home filled with love, the second is a level playing pitch in the world - or failing that, a steamroller with which to level it!

At the moment because his care is so labour intensive - I have to use an on line steamroller in my blog. And so far I think I've managed to smooth out some bumps along the way.

Thanks so much for your comments, you have made some valid points.