28 May 2009

Disneyland Paris, here we come

Gordon, lady and Thomas have just left to make the first leg of their journey to Jamaica leaving myself and Duncan behind. I've been thinking for a while that the 2 of us should also head off somewhere while they're off gallivanting around the West Indies. I asked the boy where he'd like to go, giving a choice of Legoland, Thomas Land and Disneyland Paris. He chose the latter, not that i expected anything less. So I had a look and managed to find a really good deal on the hotel and park tickets and I've booked it.

So, Duncan and me fly off by ourselves on Monday. He's already planned his itinerary. It should be great. Though it's a bit scary to go somewhere so busy without another adult. Yikes!

Going where folk like this hang out.

27 May 2009

Fish'n'chips and family

There was something odd about the sky. It was the wrong colour and a peculiar big yellow ball was visible overhead. This might have been linked to the strange feeling of warmth on my skin when I went out, but I don't want to mistake correlation and causation. I ran with the dog down through the park, beautiful with the last of the bluebells and pungent in places with wild garlic. It was early and few people were about so I slipped her lead off. I tested her recall by sitting down every so often, calling her over for a cuddle and praise before sending her off again. She was great, exploring but watchful. The beach was deserted except for ourselves and the birds. It was perfect.

Gordon cooked a Jamaican style breakfast with supplies brought over from their recent trip to Oxford. It's harder to get hold of such exotic foods in Northern Ireland. Then I took 2 children to jujitsu and dandered the shops while they worked it. I lost track of the time and had to run up the hill to the sports centre to meet them when it was over.

One of Gordon's Jamaican aunts died suddenly last week and his mum decided to go over to be with her last remaining sister for the funeral. It's a long and arduous journey so Gordon will accompany her. We decided that Thomas and Lady should take the opportunity to go and meet some of their Jamaican relatives too. Thomas has never been and Lady went when she was only 5. It would be too much for Duncan so I will stay home with him. Well, I'll stay home for some of the time, for i will be off to London at the weekend to stay with my little sister who will be celebrating her 30th birthday. My marvellous dad will look after Duncan then, and even cancelled his own trip t London to allow me to go. What a brilliant dad he is.

So during the day, we sorted out flights and hotels, insurance and car hire. They have now planned a fantastic trip to combine family duties and attendance at the funeral with a few days relaxation and fun in a nice hotel and the opportunity to tour the island. Gordon's mum will spend all but the 1st night with her sister.

Am I jealous? A little, but Duncan and I might do something fun ourselves!

In the evening we all realised we were hungry and someone had the inspired idea to go the the chippy. We had the best fish and chips for miles in the car (we eat in our car a lot as a family, not being the most restaurant friendly bunch just yet). Then we headed off to enjoy the last bit of evening sunshine with a drive. We stopped off at Strangford Lough and the children all had a good run around, collecting stones and shells and getting their shoes and trouser legs wet as you're supposed to on such occasions.

Duncan leads the expedition.

Full as I was of starch and protein, there was still plenty of room for contentment, peace, and joy in the life I find myself leading and the people who are with me on this voyage.

(The photos aren't great as I took them with my poor quality phone camera. I still like them though.)

The Catholic Church in Ireland

I wrote about the release of the recent report into the decades long, systematic, extreme and abhorrent violence, abuse and neglect. I have read more of the report and news and opinion articles on blogs and in newspapers. I have witnessed the pathetic response of the Irish Catholic church spokespeople, and even worse, the religious orders that perpetrated these crimes and who have no idea what true sorrow and repentance means.

Then via John's blog I heard this man. I witnessed his anguish and his righteous anger. I do not know how those in power in government and church can allow this man, Michael O'Brien, and all the others like him who were abused in those places, to continue to suffer.

This is outrageous. It is our national shame. We can't allow this to just hold the headlines for a few weeks and then move on to something else. There has to be a fundamental change in Irish society.

You will not be able to watch this without crying. There might be a subtitled version available soon which I can embed instead. However, Will Knott has kindly provided a transcript of the video which is copied below.

(Edit, the video is now subtitled.)

Mr. Chairman, I’m surprised at the minister there now.

First of all Mr Minister (directed at Minister Noel Dempsey) you made a bags of it in the beginning by changing the judges. You made a complete bags of it at that time, because I went to the La Foy commission and ye had seven barristers there, questioning me and telling that I was telling lies, when I told them that I got raped of a Saturday, got a merciful beating after it, and then stuffed…

… he came along the following morning and put holy communion in my mouth.

You don’t know what happened there. You haven’t the foggiest, you’re talking through your hat there. And you’re talking to a Fianna Fáil man, a former councilor and former mayor you’re talking to, that worked tooth and nail or you, for the party that you’re talking about now. Ye didn’t do it right, ye got it wrong.

Admit it.

And apologize for doing that. Because you don’t know what I feel inside me. You don’t know the hurt I am.

You said it was non-adversarial.

My God.

Seven barristers.

Throwing questions at us.


I tri.. attempted to commit suicide, there’s the woman who saved me from committing suicide, on me way down from Dublin, after spending five days at the commission. Five days I spent at the commission. They brought a man over from Rome, ninety odd years of age, to tell me I was telling lies.

That I wasn’t beaten for an hour, non-stop by two of them.

By two of them.

Non-stop from head to toe without a shred of cloth on my body.

My God minister.

And could I speak to you (comment directed to Leo Varadkar, Fianna Gael), and ask your leader, would you stop making a political football of this.

You hurt this when you do that.

You tear the shreds from inside our body.

For God’s sake, try and give us some peace.

Try to give us some peace and not to continue hurting us.

That woman will tell you how many times I jump out of the bed at night with the sweat pumping out of me. Because I see these fellas at the end of the bed with their fingers doing that (gestures) to me. And pulling me in to the room, to rape me, to bugger me and bate the shite out of me. That’s the way it is.

And you know what?

You know what, sometimes I listen to the leader of Fianna Fáil. I even listened to the apology. T’was mealy mouthed, but at least t’was an apology.

At least t’was an apology.

The Rosminians said in the report, they said they were easy on us. The first day I went to them. The first day to Rosminians in my home which is Ferryhouse in Clonmel, ’cause its the only home I know. He said “you’re in it for the money”.

We didn’t want money.

We didn’t want money. We wanted the pr… someone to stand up and say “yes, these fellas were buggered, these people were ra…”

Little girls. My daughter, oh sorry, my sister. A month old when she was put in to an institution. Eight of us from the one family, dragged by the ISPCC cruelty man. Put in to two cars, brought to the court in Clonmel. Left standing there without food or anything, and the fella in the long black frock and the white collar came along and he put us in to a van.

Not a van, a scut truck, I don’t know what you call it now. And landed us below with two hundred other boys. Two night later I was raped.

How can anyone…

You’re talking about constitution. These people would gladly say “yes” to a constitution to freeze the funds of the religious orders.

This state, this country of ours, would say “yes” to that constitution if you have to change it.

Don’t say you can’t change it.

You’re the government of this state. You run this state. So for God’s sake stop mealy mouthing. ‘Cause I’m sick of it.

I’m sick of it.

You’re turning me away from voting Fianna Fáil which I have done from the first day that I could vote. Because. And you know me. You know me Mister Minister. You’ve met me on a number of occasions. So you know what I’m like.

21 May 2009

Entrenched evil-doing in Ireland

We all knew what to expect. It is still shocking though when you read the report, or, as much of it as you can stomach. The people of the church carried it out, they covered it up. Generations of children had their lives ruined, and in some cases, taken. The state conspired with the church leaders to hush the suffering children and to ensure that their pain wasn't made known beyond the cold stone walls of the orphanages, reformatories, "care" homes for disabled children and industrial schools. What was done to these children was brutal, far worse than the accepted level of child abuse tolerated at almost all schools in the country, the run of the mill beatings and canings by teachers which were legal and known as corporal punishment. These were an expected part of education in those not far gone days. What happened to these children, taken from their families or who had no families, was far worse. They were abused in every way. They were beaten, bullied, raped, neglected.

Reading Nick's blog today I learned of the chapter of this massive document dedicated to the abuses perpetrated in Special Needs Schools and residential services. A table is used to show the 11 combination of types of abuse the witnesses endured. It is a long list of heart breaking tales, examples of hurts, lives destroyed, families torn apart. To pick a random example:
"I was locked in the washroom overnight. ......( named religious staff member)... would walk out and close the door, you’d have your ...night clothes... on and you could stand at your basin and do what you liked but you had to stay there, no blankets, mattress, sleep on the bare floor. We used to get together in a corner and try to keep each other warm, it was scary, you’d hope that nothing would happen, you could also be there on your own. ... You could be there for more than a few nights in a row, freezing cold."

For these disabled children, the report describes how they;
"generally reported having great difficulty in finding ways of disclosing their abuse to anyone. In all instances the witnesses’ particular disability was described as a barrier to communication and disclosure, both at the time and subsequently. A number stated that this difficulty was particularly highlighted when addressing such a sensitive topic as sexual abuse."
The report also details ways in which the appalling start these people had in life has affected them as they've grown up. I do not excuse or forgive this brutalisation of the vulnerable. I cannot. I want to see a revolution. The people who did this and the others who colluded in the cover up cannot be allowed to continue to wield the power and influence over so much of Irish life any longer. We ,must stay away from their churches and ceremonies. We must freeze them out. We must take back control of our schools and hospitals, care homes and residential facilities. They cannot be allowed to get away with this. They have bullied and impeded our lives for long enough. The children who suffered in the Irish gulags are owed a duty by all citizens to stand up against the vile creatures who harmed them. It is no longer good enough to point to all the good some of the clergy and others in the religious orders have done and to say that many of them are not abusers, that the majority are decent men and women of faith. That is true, at least I think so, but then I haven't read the full report. But the leaders are up to their necks in their culpability for allowing this to happen and as such have tarnished the whole show.

There must be trials and prison sentences. The guilty must be named and sent down for their crimes. The incoming leader of the Catholic church in England and Wales was wrong when he described the people who have admitted some portion of their crimes (and only when absolutely forced to do so as their cloak of concealment was finally dragged away) as "courageous".

I remember being a child and how powerless I was, and I had a very safe and happy childhood. I can’t imagine living in fear every day like generations of my country people have. I look at my own children, exasperating, joyful, vulnerable, hopeful and the idea that little people like them can be harmed for the perverse pleasure and convenience of religious orders fills me with fear and anger and unfortunately, hate. I am ashamed of my nationality and of my abandoned religion.

Other posts:
Paddy Doyle

Middleton Autism Centre, what's the point?

In the brave new world of Irish politics, we were promised great things to come from North-South initiatives. For some bizarre reason, it was decided that the needs of autistic children in Ireland would be best met by placing a dedicated autism centre in a tiny village about half way between Belfast and Dublin. Here was an opportunity for those with a vested interest in such things to proclaim the benefits of a centre that would, we were told, be an excellent resource for everyone, north and south. It has come to nothing. According to a BBC report, £6 million has been spent on the centre since it was approved 7 years ago, yet not a single child has been through its doors. Instead it, "currently carries out research and training for professionals who work within the autism field" though the founders has hoped to have children and their carers stay over in a residential block "for assessment and therapy.... Building work was due to begin in the autumn with the facility to open in 2010."

Now that the Irish economy is utterly banjaxed, the minister in charge has declared that they will be withdrawing funding from the centre and his Northern Irish counterpart is annoyed and has said, "This project has to go ahead, this project will go ahead. It is important, especially in times in economic difficulties, that we don't disadvantage our most vulnerable children, our children on the autistic spectrum."

Well that's an admirable sentiment, but the Middleton centre would be about as useful to the lives of Irish autistic people as a chocolate teapot. Middleton is in the middle of a country with appallingly bad public transport links, miles from any sizable city. The centre has a 1 page website which sets out its aims:
  • Training, Advice and Guidance
  • Research and Information
  • Educational Assessment
  • Learning Support
But why should people have to travel to Middleton for all this? There is already a training centre in Belfast run by Autism NI, wouldn't it make more sense to improve the services offered there than to start again form scratch? No doubt there are training services offered in the republic too that could be improved.

Research and information- are we really expected to believe that a world class autism research centre can be built from scratch in a village of 240 people? Where is the nearest university? Are the very best in autism science going to move to Middleton? Are they going to equip a new lab space? Are there not already bodies like the admirable Research Autism set up to share "information resource[s] for parents and professionals" and with a charter to "publish and disseminate research findings"? It sounds like more wastage to me.

Educational assessment and learning support can be carried out in the child's home or school. It is important to have more well trained and knowledgeable people who can do this work. Again, the funds can be put to better use to improve the training of teachers, to employ more speech and occupational therapists, well paid and dedicated classroom assistants and educational psychologists.

There is so little help for parents in NI when they are told their child is autistic. There needs to be much better access to diagnosis, more of a support system in place in each area post diagnosis, more opportunities for our children to join in with groups and classes, and an overhaul of the educational opportunities available for those (the majority) who opt to have their children educated at school. However, all changes must be based on the evidence and not on the loudest voices and special interest groups calling for ABA for all or unproven biomedical treatments.

I can't even begin here to address the dire state of provision for autistic adults in Ireland.

14 May 2009

The Considered Opinions of Thomas, aged 7

Me-Can I ask you a few questions about your life and then write your answers down on my blog so people can read them?

Tell me about your favourite things.
The best things for me are going out places and...no...going to Disneyland, I mean World. Going to Disney World on holiday is the best. And I like going out places too.

Where do you like to go?

What else do you enjoy doing?
Playing with my friends.

How often do you see them?
Almost every day, but not the friends we have to drive to see.

What do you like doing in the house?
I like watching TV and eating grapes.

Do you like having Lady and Duncan as your big brother and sister.
Well...some of the time.

Do you know what Duncan's disability is called?
Yes, it's autism. It mean that he's autistic.

What does that mean, do you know?
It's harder for him to know things.

What sort of things?
It's harder for him to do what I tell him to.

Do you think autism makes him better at anything as well?
He's better at running and he's better at using the computer.

What is it like having Duncan as your brother?
I wish he wasn't autistic then he could play with me more. But I like playing chase with him.

How do you play that?
It's like ordinary tag, I run after him and we do loads of laughing and screaming.

Yes, the two of you make a lot of noise sometimes at night when I want you to go to sleep!
That's enough questions now Mummy.

OK then. Thanks!

13 May 2009

Bitter, failing, sad and ignorant, that's me!

I don't often check the yahoo email account listed on my sidebar. But sometimes when I do I discover a pleasant email from someone who wanted to talk in a more private space than the blog comments, or it might be an offer to join some blog aggregator or to advertise some product or other.

So this was new, I'm not sure whether it should be described as hate mail or an offer of assistance. See what you think, the many spelling errors are as found. I will respond in red.
Sent: Thursday, 12 February, 2009 11:03:20
Subject: Your son's autism can be cured..with homeopathy..mine was!!!

I couldn't resist emailing you, as the contempt and bitterness you exhibit is quite understandable and yet very unsettling. What? Where have I exhibited contempt and bitterness, and if I had, why should it be understandable? I too had a son who was autistic..although mildly on the spectrum...he was clearly on the the spectrum...I spent over a year searching fervently for a way to heal my boy. That sounds jolly good fun. My son could never be described as "mildly on the spectrum", oh no, he's your full strength autistic! I did all the protocol of the so call DAN doctors and the gluten and caisen free diets...Methyl-B-12 shots...Occupational therapies etc. the whole nine yards...nothing helped, no surprise there, that stuff is all hokum until I tried a new form of external homeopathy. Oh, here it comes...First of all, I have to comment, and to probably no avail, as I can see your posture is quite fixed on your mindset about homeopathy, but let me just be frank...and clear...your ignorance and contempt for a medicine that has cured and ameliorated conditions for several centuries Prove it is quite nauseating to say the least. Surely if I'm making you so nauseous you can find the right type of magic water to cure it! Get over your Irish stubborness Nope. If my stubbornness (I take it that's what you meant) is what saves me from falling for the hype of cranks, then long may it last. (I'm Irish too And?) and start looking at the real science seriously, you're promoting bollix and asking me to look at the "real science"?! I hate to sound too brash and arrogant myself so stop yourself, but you see...my happening upon your website was none the least a detour upon my journey which is to do research on autism as I am currently writting a book about the subject.Flippin' heck, she's writing a book! I can only imagine what a publisher's dream that will be based on the quality of writing here. I also have over 15 years of a science and medical background shall I take your word on it? I wonder what exactly this "science and medical background" amounts to including an understandiing of quantum physics Don't be daft! I've a degree and a postgraduate degree in physics and I wouldn't claim to have much of an understanding of quantum physics, more than you though I'd bet! and that vital force that you so readily scoff at where is it? share your evidence and I shall scoff no longer. Quite frankly, if you think that your son is uncurable my son is perfectly autistic, I feel no desire nor need to cure him. I only want to parent him to be the best he can...I feel great sadness towards you and your family particularly your son you can stuff your great sadness, we're all getting along quite delightfully well...as you are failing him with that kind of attitude No, you are entirely wrong. I want to extend my help to you if you will accept no, as a practitioner liaison who works with children on the spectrum, I feel sad for those children using the exact same cure that brought my son out of his world and into ours, out of his world, into yours, where had he been, Mars? I will extend that therapy to you at cost. no thanks I will not charge you above and beyond what I pay for it...which is about 50 dollars a month...if you want to learn more about it...go to www.quackeryforkids.com or www.expensivecrap.com let me know what you want to do. I would be happy to help you heal your son...and it can be done. Also check out www.sawyoucoming.org as they employ the same patch therapy that I used with great results.

I look foward to hearing from you, I'll bet you did

Most Sincerely,
J Brown
Patient Liaison
Quit being so feckin stubborn and drink the kool-aid, bejaysus.

What on earth was all that about? Did she want to insult me, or bring me on as a customer? Did she want to tell me about her dodgy companies and quacktastic web sites or piss me off and accuse me of failing my child?

What an odd, pathetic email.

8 May 2009

Doctor distractions

Been lacking blog juice lately as my brain ponders a whole heap of stuff. Thomas has gone with his dad and grandmother to Oxford for a few days. They'll all be home tomorrow. He is having a good time, enjoyed the Star Trek film last night. (I want to go see it myself some day too.)

I popped into see the GP yesterday, had a mole on my arm I wanted checked out. I didn't think it looked too scary but thought it best to be overcautious. Duncan and Lady came with me. Duncan pranced around the doctor's room looking for the Thomas trains, for surely, every doctor has some stashed in a box somewhere? Sadly, they weren't to be found so he hopped onto the examination bed, grabbed the pillow and telling us all about his discoveries, lay down for a few seconds. All the while I was talking with the doctor. To distract him (Duncan I mean) I asked him to look at the eye test letter chart and to read the letters. Instead of naming each letter, he made words of each line, "zee not, dosap..."

The doc laughed, and remarked on what a clever boy he is.
And my mole is entirely benign, I'm just to photo it so as to track possible changes.