Sunday, 11 October 2009

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.




Xbox4NappyRash said...

The 'state of affairs' isn't regrettable, it's downright shameful.

I can barely begin to grasp the level of frustration and helplessness that grips parents like yourself, Mr McDonagh, and so many more when the people who are supposed to help, don't.

AnnB said...

It's quite frightening how kids with special needs are treated in Ireland. If you don't have parents who are able to fight your corner; you may as well forget any kind of meaningful education. This situation is allowed to continue because parents are too exhausted to fight and officials look the other way. That's why I blog: it's really important to document what exactly is going on. Comments are a huge support, as they get people talking and ultimately demanding change. Thanks and spread the word!