24 Dec 2008

Christmas Preparations

Happy Christmas to anyone who reads this blog. I love writing it and knowing I've got a record of some of the family's exploits, as well as my rants about this and that. I've been at it for almost 3 years now and wonder when I'll have had enough.

Lady has got some of the neighbourhood kids in for a Christmas party right now. She's made popcorn and rice crispy buns, and is playing a selection of top tunes on YouTube as they dance about. Simple pleasures eh?

Gordon is off for a run with Pippi. He's been preparing for tomorrow's dinner while I wrap the children's gifts and sort out rooms, trying to prepare a bit of space for the new clutter due to join us tomorrow morning. He'll be cooking turkey with pork belly. The pork skin's got a nipple. I feel slightly freaked out by this evidence of it's mammalian beginnings.

Duncan has been playing Zoombinis and re-reading the little book we made together called "Christmas Days" depicting the expected events of tomorrow. Thankfully I managed to source a cuckoo clock, and it's rather fine, even if it's not quite authentic and requires batteries. At least it's got a white bird and the pendulum (so I've been assured) does move so it should tick all Duncan's boxes. I might cheat and make a little label saying it was made in the Black Forest. Ah, stooping to forgery to please my son!

I'll bring all the gifts down tonight last thing. We don't leave presents under the tree here, one little boy would find it too difficult to resist ripping them open to seek the clock and other items he so desires.

One more thing, I have to get in a bit of a boast about Lady and Thomas and how well they did at their gymnastics competition. Thomas won all the gold medals for his age group surprising me with how hard he concentrated and how much effort he put in. Lady didn't win any medals, the standard was so much higher for the 10 year old competitors, but Gordon and I both got to see her performance and she did really well. She's strong and has great poise and grace. She desperately wants to go to more lessons and improve, so she can do that after Christmas. It was a pleasure to watch them both. I never realised that either of them are really any good! I usually drop them off outside the hall as I always have Duncan with me in the car and I don't like to take him in there. Lady was sad at first, especially since Thomas had done so well, but she's OK now and feels a bit more hopeful about the next competition.

Thomas was just a picture of pride and joy as he stood in the middle of the podium 3 times. On the last time, he tuned to us, his face beaming and gave us 2 thumbs up. It was a nice thing to see.

22 Dec 2008

The Big Family Christmas Party

It happened yesterday. I'll get my complaining out of the way first.

We gathered in a hotel back home, and though my Dad had requested and been promised a function room for our horde of 13 adults, 9 children and 2 babies, someone in management decided the room wasn't big enough for us and set our tables up in the main function room instead. And though we'd expected to have a room for 3 hours or so, we had to clear out after only 90 minutes to make way for a kid's disco.

Then the whole meal/drinks delivery was utterly chaotic. Instead of having service at the table, we had to join the queues for their lunchtime carvery in the adjoining room. When you've got loads of hyped up kiddies, going back and forth to fetch food isn't as easy as just sitting there and having it brought to you. The food was bleuch too, apart from the soup. It seems all these sorts of places can make a decent vegetable soup, the old fashioned kind with bits of lentils and barley. Duncan ate 3 bowls of the stuff.

But we were all in good form and the crack was mighty. The children were dressed in their finest Christmas specials (some in shirts Hobbits would be proud of) and the grown ups had scrubbed up nicely too. The children loved having the big room with a dance floor to charge around, and enjoyed catching up on all their important news; playground coups and the forging of new alliances on their streets, who's teeth had fallen out, what's happening in the world of culture (limited to HSM3, Hannah Montana and Doctor Who) and most importantly, who was getting what for Christmas.

Duncan had expected a particular train and DVD for his gift. I knew which sibling was buying to him and told him the items he preferred, thinking either of them would suffice But when he got the DVD but not the train, Duncan was upset and ranted and whinged for a while about the shocking injustice of it all.

Most of the time he was fine, and he liked sitting in the seats a little apart from everyone else looking at his DVD and the Thomas & Friends book he's received. But one little cousin just loves getting him all riled up, and the 2 of them had a few "wrestling" sessions. Often he just headed off whenever he felt like it, so my head was turned watching out for him and checking to see where he was and what he was up to. It would have been a heck of a lot easier if we were all in a smaller room.

After gulping down the meal we moved to some seats in the lounge, thankfully free of other customers so we were less likely to disturb people. The disco got going and our gang joined in. Even Duncan indulged in a bit of dancing now and then. They loved it.

Up to now, only Duncan had opened a gift, special privilege and all that. We knew that letting the littlies open presents in the lounge of a hotel could be just a demonstration of the effects of entropy so we all trooped off to my brother's house. Entropy still prevailed, but we had a better chance of gathering up all the pieces in the more familiar, enclosed space and knew that, if someone got home and realised that bits of their new Hot Wheels set (or whatever) were missing, they'd be able to get them back later.

The children, bless their acquisitive little hearts, liked the gift allocation bit the best. Lady gained a CD player, clothes and a beautiful necklace, Thomas got DVDs, (Doctor Who and Speed Racer) as well as Narnia dressing up clothes, Duncan has another Thomas set and Star Wars dress-up stuff. The adults all got new stuff too, and very nice it was.

Perhaps next year we'll try something different, but we'll certainly have another family get together. It's so lovely to see them, and for some freaky reason or other, all the children in our extended family are delightful, sweet, cute and brilliant and we adults still really get on well and actually, genuinely enjoy each other's company!

19 Dec 2008

A sense of style

Lady has cared about how she looks for a long time. Since she was a toddler she has chosen most of her outfits though often when she was younger, she'd mix it up in clashing colours that had me rolling my eyes and envying her nice, neat, pristine and coordinated friends. But I usually let her make that decision, knowing there were plenty of other battles that I had to win. As she's grown, she has developed a cool and easy style and always looks good. She's so different from myself at her age, when I had no confidence about clothes and hated shopping, worrying about what my friends might think about what I wore, and just having no idea what looked good on me.

Thomas too likes to dress to impress, and gave me shopping instructions for the Big Family Christmas Party we're going to on Sunday; black trousers and a button down shirt. He's not gone too far into junior meterosexual territory yet, hasn't asked for hair gel or anything, but he makes an effort now and then.

So far, Duncan has only worried about clothes when he's been dressing up. Then he'd pull together a look using stuff from his dressing up box, but also the drawers and wardrobes of all the family, if he thought it fit the part.

But when we were in Florida, I was buying tops for the children, and he picked a couple that he wanted. One was a Spiderman shirt printed with a picture of a rippling chest, which looks so funny on his skinny frame. But hey, he wanted that one. He also chose a bright Disney shirt and has worn it often since we got home.

I've usually laid an outfit out for him each morning, but more often than not he wears what he wants. Recently there was another new development. We were in the supermarket, home to dough-nuts, sweets, crisps, DVDs and toys and so full of temptations for a boy like Duncan. He looked at these in turn, chose a packet of gum, examined as usual the case of the much wanted but at the same time feared Dinosaur DVD, then said, "go see boy's things" and walked off to the clothes section! I wasn't expecting that. He liked the look of shirt/waistcoat combo, saying it was a "Lord of the Rings top." (Lady's just explained why; he's seen clips of the Hobbits on YouTube.) But he opted instead for a stripped and very handsome looking shirt, and a Superman T-shirt. Now he has a special outfit for the party too.

I just need to think about what I'll be wearing now. I can't let my fashionable children down.

18 Dec 2008

Thomas the man

Thomas told me his plans for adult life last night. He's decided that he'll be an actor and a doctor. He'll do each job part time, and no doubt expects to excel at both. He intends to have 5 children to be called, Ethan, Thomas, Ricky, Melanie and Marie, born in that order and each a year apart. The first child will be born when he's 20, which as we all know is absolutley ancient. He will marry a kind and funny woman who works as a gymnastics coach. Perhaps he's been inspired by some of the lovely and pretty young woman who teach his gymnastics class. They'll probably marry after Ethan is born so he can go to their wedding, and they'll all live in a 8 bedroom house (1 room each plus 1 for guests) in a warm part of the US. The children will all be home educated so they can have more fun. Lady was questioning him about his parenting style, asking if he'd be very strict or easy going, he replied, "I'm not going to be strict, why would I do that? I'll let them take a piece of fruit whenever they want and have a bowl of cereal whenever they want. But they'll always wear their seatbelts in the car." Lady also asked if he'd smoke when he's older, "No way!"

Nice to know he's got a plan.

14 Dec 2008

Lap it up

Duncan has decided that he likes to drink milk, lots of milk. However it has to prepared as in the Disney film The Aristocats. He pours the milk into a bowl, adds a sprinkle of cinnamon, a dash of vanilla extract, a smidgen of sugar and a dollop of double cream, then he blasts it in the microwave. On a few occasions he placed the bowl on the floor and lapped it with his tongue, but realising it's an inefficient way for a human to consume their vittles, he went back to the more traditional method. Once, perhaps inspired by the relish with which the cartoon cats dinned on the concoction, he made a large portion up for our dog Pippi. She tried it, but didn't like it and I poured it away explaining that dogs don't like milk, just people and cats. "And cows," said he.

Lady's friend from next door has been to stay with us for a few nights. The girls enjoyed spending lots of time together, with late night chats and lots of time spend enjoying such pre-teen delights as the Jonas Brothers and HSM (if you don't know the acronymn, you'll not care) on YouTube.

Best of all, Lady went with her friend to a school disco on Friday evening. The pair got all dolled up, Lady wearing a bit too much silvery eye shadow, so it fell under her eyes, panda fashion. A quick wipe sorted her out and off they went to face the music. I was told afterwards, that 3 boys had asked my 10 year old child to dance. Oh my. Is this the beginning of a new phase? Will I know how to strike a balance between allowing her freedom to have fun, make new friends and enjoy her journey towards adulthood with protecting and sheltering her and teaching her to make safe choices. Ah well, she's still very young. I'll just take it as it comes.

Thomas was a bit put out that he wasn't able to go dancing too. He rocks the joint when he's dancing in his room, not that he knows I've seen him. He asked "why do the girls get to go to the ball, and I don't?" So endearing! My sister pointed out the Harry Potter connection; school balls instead of discos. To make it up to him, I took him to the soft play area this afternoon and he ran himself ragged while I supped tea and read, so different from when Duncan's there too. Duncan whiled the afternoon away by lounging in the bath (the boy has at least one a day) and checking out cuckoo clocks on ebay. He's got his eye on one that costs over £200. I bid on a couple but didn't go quite high enough so I still have to get one from somewhere before Christmas. And he's very particular about what it must look like and how it must perform. Bum. At least I won a Lego Spiderman so perhaps that'll distract from any potential clock deficit.

11 Dec 2008

More dicussion on prenatal testing, disability and accuracy

A recent post generated some great discussion. My reply there became too long, so I've put it down as another post.

In an earlier comment I wrote:
“Gonzo Girl mentioned that she thought more DS births was good, not because it's more evidence of a caring society (as interpreted by The Mail) but because people will know more about how life can really be for people with DS when they have more chances to meet such people.”

(I should have made it clear that this is just how I interpreted what The Gonzo Girl had written, but I could be wrong. I hope I have not misrepresented her position.)

In response, Tom wrote:
This is an interesting statement, and one that didn’t really get addressed on BadScience through all the shouting. It seems to me that, if only for social reasons it admits that there is a personal cost to being disabled. It then goes on to argue that it would be better if more people paid this cost because there would be a benefit to the whole group. This seems like a good deal for the current members of the group and a bad deal for the new ones.

I am rubbish at dealing with disabled people (well, not if your just missing an arm, or something, but I’m sure you know what I mean) for precisely the reason Gonzo Girl mentions. I have very little practice. So I guess I agree that increasing the numbers might bring benefits. Equally one never knows, you might end up with ‘Downs Plague’ headlines in the Mail. Predicting the reactions of society as a whole is a tough business.
I think that in many ways, being in a misunderstood minority is a reason for some of the difficulties disabled people face. Like Tom said, many people never encounter (at least not knowingly) disabled people, especially those with learning disabilities or atypical neurologies like autism or Tourette's. I'm not sure what he means about this seeming "like a good deal for the current members of the group and a bad deal for the new ones."
I think we’ve hit one of the things I think people misunderstood. The point, as I read it, was that parents were in a difficult position and the last thing they needed was to be told emotionally loaded stuff about the ‘kind’ decisions other parents were making that was simply untrue. It seems to me that it IS a bit scumbaggy to tell parents contemplating an abortion stuff that isn’t true (whether for, or against) to further an agenda, moral or otherwise.
The woman from the DS society said that it seemed that parents are "thinking more carefully" and that there now is "greater inclusion and acceptance, with mainstream education having a huge role. We think this plays a part in the decisions parents make." There's nothing wrong with her saying that, but the release of and focus on badly interpreted data is wrong.
People on BadScience can be kind of rough. On the whole, I find, they mean well. Even, or perhaps particularly, Dr Crippen seemed to me to acknowledge and be quite annoyed about the problems faced by the disabled (I would probably not have put the comments about the paralympics in quite the way he did.). One of the difficulties is that experience doesn’t necessarily make you right and people on the forum will challenge you regardless.
The dangers of quackery come up on BadScience all the time. It is a plague for disabled and {whatever everyone else is called} alike. Taking autism as a case apart, it is pretty much only the alternative medicine/anti-science movement pushing a cure. You DEFINETLY have everyone (minus a few trolls) at BadScience on your side on this point. If you say ANY cure is a bad thing, then that’s something else.
I really like the Bad Science blog/column, forum and the related blogs and appreciate the work they do in tackling quackery and bad science in all its forms. Heck, Ben linked here a while back and generated more hits in a few weeks than I'd had in the couple of months before. I've written about the importance of accurate science, as has Michelle Dawson many times (she's an autism researcher) as well as many of the people on the Autism Hub blog aggregator.

I'll just say wrt a cure for autism, I think it's as likely as a "cure" for homosexuality, and the idea of something that would cause such a huge change in neurology is worrying to me. But should it be available and safe, I would let my son decide for himself when he's an adult. If by cure you mean, helping him to communicate more effectively, regulate his impulses and learn how to maximise his talents, then fine, bring it on. As for your question on terminology, in the context of these discussions I say non-disabled. Some say, temporarily able-bodied.
One of the feelings that I came away with from BadScience was that people are sensitised to the word ‘pity’ and almost start the conversation with “I don’t need your pity’ (not you I hasten to add). The thread in BadScience ended with myself and a guy called The Nameless talking about what we actually felt that had been interpreted as pity.
Disabled people have been made objects of pity for so long. Some charities have misguidedly presented a face of disability, usually a poor, innocent child, that is as pathetic and needy as possible to evoke pity and funds. Pity usually precludes respect and dignity. Empathising with another's pain or difficulties is fine, especially when it's understood that many of those problems come from other people's attitudes and systematic failures.
The page you linked to gave me some stuff to think about. At the very least I think people are definitely less careful around disablist (new word on me) language than they are with sexist language. It can be all too easy to talk about a group of people you don't expect can hear you in a short hand way and say things that, if held up to the light, you have no choice but to back peddle away from like crazy.
I appreciate Tom for taking the time to read that. There's a good (short) post here about disablism and language.

In response to Michelle's comment, Tom wrote:
This is the main point for me that never got resolved on Bad Science. The information in the DS story may *technically* have been accurate, but it was being used to make a claim, 'society getting kinder', that created a totally false impression. Telling people that, in this sense, society is getting kinder IS giving people false information. I would be shocked if Ben Goldachre was against people having access to correct information presented in a proportionate way.
I think Ben Goldacre was speaking out against inaccurate numbers. I don't doubt that there is data suggesting that conditions now are better than before for people with DS; higher life expectancy, fewer people in institutions, more people employed. There probably is evidence somewhere of a more accepting attitude to the condition in society at large too. The DS births data however, wasn't evidence of such a thing and I agree that it's wrong to interpret it as such like many media sources did.

Michelle wrote:
But I also disagree with Dr Goldacre's (and Dr Crippen's) stated position that, because some people might feel bad, it's "scumbaggy" to raise concerns that are important to disabled people. Or to provide accurate information about differences in ability.

What Drs Crippen and Goldacre are demanding is unquestioning adherence to the "realities" of disability, according to their views.

They want discussion of major issues concerning disabled people to be shamed and silenced. They don't want their ideas tested (might make some people feel bad) and they don't want disabled people to get in the way of their certainties.

At least, this is what they have so far expressed. As a great fan of Ben Goldacre, I was surprised to see him take the position that some ideas should not be tested or discussed, on the grounds that some people might feel bad.
I agree with this.

Tom responding to Michelle again wrote:
I couldn't disagree with your interpretation of the Bad Science and Dr Crippen pieces. Dr Crippen rather complicated things with his digression into the Olympics, I can understand why his post upset you.

In so far as Bad Science goes, are you just referring to the text of the link to Dr Crippen, or the article as a whole. As mentioned I interpreted the 'scumbaggy' comment to refer to giving factually untrue information to parents. If you have a wider criticism of Ben's article I would be very interested to hear.
Dr Crippen just went weird and ranty. I felt Dr Goldacre's post was fine except for this quote, "For many parents the decision to terminate will be a difficult and upsetting one, especially later in life, and stories like this make a pretty challenging backdrop for making it."
I've explained why already. And yes, I was upset by the text of Ben's link to Dr Crippen's article, never mind his linking at all to what I considered a badly written post full of speculation and negative stereotyping.
By the way, in coming here I realized that you folks had some what more reason to be offended than I had at first supposed. I'm still chewing that over. I just don't want it to come across like I'm busting in telling you you're wrong. It just bugs the hell out of me that we can read the same article and take away something totally different.
If Tom is referring to Dr Goldacre's article, then I think he and I have interpreted it the same, though I disagree with the small section I've already mentioned. I'm not offended, I just don't agree with all the ideas presented.
Dr Crippen's style makes defending him harder than it might have been. I can see a point in what he says about the Olympics that I have some sympathy with, but the way he put it isn't at all helpful. I won't defend that issue unless you're really keen.
I thought Crippen's paralympics rant was ridiculous and his trying to defend it by saying he thinks the olympics is a waste too, didn't work. He was purporting to read the future for his fictional patient, and foresaw all sorts of dire consequences should she proceed with her pregnancy with a DS child. It was plain silly and I commented there once. I didn't bother to try again as he was clearly uninterested in a reasonable conversation, and many of the other commenters were extreme in their views.

As for assigning mental states onto others, it's best just to discuss the content of what they wrote. It's not possible to tell if they are offended or upset unless they directly say they are, like when I wrote in my post that I was saddened by the comments on Crippen's blog and more so by Dr Goldacre's link text.
"None of what I wrote or quoted was challenged in any rational way."
I agree there was a bunch of stuff that didn't get dealt with. That's why I followed you guys here. Personally I think it goes both ways. There seemed to be a lot of unwillingness to accept, what was for me, the central point of Ben's article, that the reasoning behind the "society is getting kinder claim" is simply wrong and giving wrong information to parents making these difficult decisions is bad.
Well yes, the discussion in the comments got derailed from discussing the original post. But there were many issues raised that are important some of which were dismissed with a jibe about the author's emotional state. Some of the posts (I've just had another look) are obviously from people who are against the provision of all legal abortions and there's a strange comment trying to compare selective abortion to walking away from or killing off a child who acquires a disability; not at helpful or relevant. I think you Tom, were one of the few people who tried to actually engage with what Michelle and The Gonzo Girl wrote, instead of scoffing at them.

9 Dec 2008

Homepages - Tales From The Irish Blogosphere

Doesn't it look great! There's a great new book out. It'd be perfect for Christmas presents for all your friends and family. It's called Homepages and here's some more information:
Homepages is a unique collection of stories and photographs, the first of its kind in Ireland. The nation’s best bloggers hold forth on the theme of “home”, covering everything from pets and expat life to parenting and the Kellogg’s Variety Pack. By turns hilarious, heartbreaking and thought-provoking, it promises a captivating read and showcases some of Ireland’s best undiscovered writing talent.

All proceeds from the sale of this book, compiled on an entirely voluntary basis from submissions made via this website, go directly to Focus Ireland, who provide services and support for people who are homeless across Ireland.

The book is now on sale for €14 ( £10.96 ) via Lulu.com on a print-on-demand basis. Click here to order your copy!

Now doesn't that sound like it'd be a good read? It'll make you laugh so much you'll wee, and cry like The Champ's just died, or provoke such deep thoughts that you'll be modelling for the next Rodin.

These are the contributors:

It is after all, a list of the nation's best bloggers, or rather, the nation's best bloggers...and me.

Plaudits to Catherine Brodigan for getting this organised. She's done a marvellous job and I hope it sells like hot pies and makes loads of money for Focus Ireland.

One night in Dublin

My dad came over early so leaving the children in his capable hands, we caught the train to Dublin, buying coffees and bacon rolls to sustain us. Ah the innocent times before we knew that dioxins had also entered the food chain in Northern Ireland pork.

Dublin is a place I always enjoy visiting. The day was cold, the sky was blue and the streets around Grafton St near where we stayed, were full of folk wrapped up like Inuit. Having determined that this was to be a time to relax and unwind, I was in no mood to tramp for miles around the streets like we usually do on city breaks. This time we took taxis wherever we wanted to go, and I wore boots with silly heels, not my usual trainers.

We dropped our bags at the hotel and dandered about, stopping for lunch at Wagamamas, as recommended by Mark. After a few hours of strenuous chilling out, we decided to go see a film. I wasn't in the mood for anything heavy or depressing, so we opted for the Coen brothers' "Burn After Reading." I didn't like it much, too wry, too much stupidness and characters doing random stuff that made no sense. But there were a few chortles to be had and it fulfilled the purpose of passing time in an effortless manner.

The next task was to have dinner. We decided to heed the advice of big brother Trevor and went to The Cedar Tree Lebanese restaurant, ordered a set of mezes and a bottle of red wine and went to work, and indeed, it was good. Now either the Lebanese wine was particularly potent or I'm a light-weight, but I was good for nothing after and despite our good intentions to prop up a bar somewhere for a while, we headed back to the room and watched the last 10 minutes of Wallander.

A favourite part of spending the night away from my children, is the ritual of a hotel breakfast: the fruit juice, the fresh fruit, then the huge plate of pig meat in various configurations accompanied by some chicken embryos. But the dioxin contamination meant we were denied this pleasure so he had an omelette and I had waffles with maple syrup, not as good as the real thing.

Thus fortified we had time for another dander around. Since Gordon was the birthday boy, I was happier than I usually am to spend time in music shops where he ogled bass guitars and in HMV as he browsed CDs and DVDs. We went around the department store Brown Thomas for a bit, wondering just how anyone can bring themselves to buy that sort of stuff at those sort of prices.

Another chilled out train journey north, then leaving Gordon in Belfast as he had to go into work for the afternoon, I headed home to relieve Dad from child care duties. He told me that the children had been absolutely no trouble at all. Isn't that just what you want to hear from your baby sitter?

After about 32 hours away from home, I felt like we'd had a week off. Just a little bit of adult time goes a long way. Thanks Dad for letting us have it.

5 Dec 2008

Question for Dubliners

Have you any ideas on where I could take my husband for a good meal and a nice evening out in Dublin this Sunday? It's his birthday, so my dad's going to babysit overnight* and we'll be taking the train down (Down to Dublin) and staying at Brooks hotel on Drury St, so somewhere a tipsy stagger away would be nice. I see there's a restaurant in the hotel, which is probably fine but there's often a better atmosphere in other establishments.

I'm not looking for anything fancy, just so long as the food (and the crack, oh fine Miche, craic) is great we'll be happy. It seems loads of places are closed on Sunday evenings too; curses on them.

*thereby crushing the perception that life after birthing a disabled child is damaged forever.

4 Dec 2008

Prenatal testing and disability

There have been several articles in the UK media recently about prenatal testing and the number of children with Down Syndrome born each year. Some stories have suggested that an increase in the number of children born with Down syndrome, suggests that we're living in a more caring and accepting world, while others have criticised the interpretation of the data, suggesting that the percentage of fetuses with Down syndrome to be aborted has not changed.

Via Michelle Dawson's TMoB board, I discovered a couple of articles in the Times, one which disgusted me and one which I cheered. The first, by Minette Marrin, contains many outstandingly ignorant and prejudiced statements, like this:
I am convinced that it is a grave misfortune for babies to be born with Down’s or any comparably serious syndrome. It’s a misfortune for their parents and their siblings as well. Sad observations over decades have convinced me: a damaged baby is a damaged family, even now.
She goes on to preempt any disagreement with her views:
I resent the moral condescension of those who claim that people who think like me are not only wrong but hateful; there have been vicious attacks on me in the blogosphere by disability-lobby extremists. My point of view does not make me a heartless eugenicist.
I think that this article is hateful. I'm not sure that my saying so counts as a "vicious attack" nor that I'm a member of the terrifying "disability-lobby extremists". Watch out, they're coming to a town near you with their torches, pitchforks and calls for ramps, assistive communication devices and individualised education plans!

I don't think her views make her a heartless eugenicist, but they do display a belittlement of the value of disabled lives, and a inordinate emphasis on the difficulties faced by disabled people, as if non-disabled people enjoy a charmed, perfect, blissful existence. See this example of Ms Marrin's reasoning:
In a hyper-sexualised culture that worships bodily perfection, beauty and sexual success, adult life is also bound to be painful for people with Down’s.
Isn't she aware that many adults, even the non-disabled ones, have relationship problems and broken hearts and personal insecurities?

India Knight, also writing in the Times, issues a slap down. It's lovely. In response to Marrin's line:
...what more powerful “social reason” could there be for an abortion than the virtual certainty that the foetus would be condemned to a life of frustration, disappointment, dependence, serious illness and poverty, to the great sorrow and hardship of its family?
Ms Knight writes:

I like 'virtual certainty'. I mean, f*** science. Bugger medicine. Take your research and shove it. 'Virtual certainty', innit? No jaw-dropping medical advances taking place every year, dear me, no. Sure, your hole-in-the-heart baby - to pick one example at random - would have died not very long ago, and is now likely to lead a full and active life, heart fully repaired, as though nothing had happened. Life expectancy for people with Down's has doubled since the 1980s - but hey. Let's not nitpick. Or, you know, believe in the fundamental decency of human beings, or in the possibility of finding joy - and pride, and strength - in unexpected places.

Applause from me! And to another one fighting the ignorance, Nick, dad to Jacob and his siblings, who tackled some blogger's assertion that people proceeding with a pregnancy when they know the baby will be disabled, view their children as pets. Nick responded:
If you are going to approach a subject of such emotive power as the right for people who have a chromosomal difference to exist, it is a noble idea to invest your strongly held opinion with first-hand experience. Go meet some downsies. Get to know them. And possibly when you’re at it meet a few blind people. They’ve been holding us back for ages too. The autistic ones are no better. And cancer sufferers are an insane drain on society as a whole. Idea: burn the hospitals altogether, and the clinics, and shut down any factories that make wheelchairs or crutches or other such resource-squandering gimmicks. Let the bastards with heart issues die off. The car-crash victims probably did it to themselves, so just pull the plug now and cut down on the greenhouse gas. Double win!!

And when they’re all conveniently out of the way we’ll sit down, you, me and Dr Mengele, and we’ll really have it all to ourselves. Because there won’t be anyone else left.
I came across another wonderful article from the F word blog. The author, Victoria Al-Sharqi, is a disabled woman who declines naming her conditions because, as she says, "if you can’t label me, you can’t define me and you can’t write me off." She writes:
Disabled people who do oppose selective abortion are usually dismissed as unqualified to speak about the topic. I lose count of the number of times that I have been told that the ‘seriously handicapped’ clause does not apply to People Like Me. It applies to those poor people who can’t speak or even wipe their own bottoms, let alone appreciate life for what it is. I just don’t understand what it means to be severely disabled; I’m blinded by the relative mildness of my particular handicaps. But fear not, enlightenment is at hand. While I may not understand severe disability, there are plenty of able-bodied people who do, so why don’t I just sit back and leave these difficult questions to the real experts?
I think that every autistic person I know who has written publicly about autism and/or disability issues, has been told the same.

I wrote about the development of a prenatal test for autism and selective abortion a few years ago here which can be summarised by this excerpt:
Prenatal testing puts pressure on parents, mothers in particular, to reject a specific child. This is a whole different issue from that facing women who are pregnant and do not want any child at that time. Woman are getting the message that they would be irresponsible to chose to give birth to a child they know to be disabled. These children are seen as 'drains on society' leading 'empty and pain-filled lives'. They are said to 'cost the state too much to care for them'. This is eugenics. It is anti-feminist.
Yesterday, I read another opinion on all this. A GP blogs about a pregnant patient of his who has discovered that her fetus has Down syndrome, who wants an abortion and who "feels particularly bad about it because she too has read and listened to the recent ill-informed media barrage which alleges that more and more parents of Down’s babies are deciding not to have abortions."

He's critical too of the Down's Syndrome Society's chief executive for suggesting that the higher birth rate of Downs babies "seems to show that parents are thinking more carefully before opting for termination."

Dr Crippen writes:
The Down’s Syndrome Association live in the same cosy world of politically correct half-truths as the para-olympics. Oh! Dear me, how dare you suggest that watching people play tennis in wheelchairs is not just as exciting as watching Wimbledon? How dare you suggest that Down’s Syndrome sufferers cannot lead a completely normal life?
Oh the sarcasm kills!

The post contains other points I take issue with and I wrote about some of them in my comment on the blog. Michelle Dawson also criticised the post but her concerns were written off and she was labelled as "getting emotional, silly and abusive". The majority of the comments there just make me sad, but not as much as seeing Ben Goldacre, writer of the fantastic Bad Science blog, for whom I have great respect, linking to Dr Crippen's blog post on his own MiniBlog with the description, "Some Crippen realities on Downs. It really is a bit scumbaggy to make parents contemplating a termination feel guilty"

Does Dr Goldacre really believe that we shouldn't discuss these issues for fear of making prospective parents feel guilty? Aren't the lives and views of a whole group of people, deemed by society to have lives that are better not lived, not important at all? Is this post "scumbaggy"? Isn't it worth pointing out the way the NHS screening program works, as explained here:

The NHS' so-called 'best practice' information leaflet devotes less than 3 pages to informing parents about Down syndrome. Most of this limited information is about maternal age and chromosomes rather than people. People who have Down syndrome are not featured talking about how they view their lives. Nor are their families. There are no photographs of people who have Down syndrome. This 'best practice' guidance then devotes 12 pages to describing the screening and diagnostic process in detail. The message? On balance, parents should be far more interested in learning about the screening process than the condition actually being screened for.

Is that post also "scumbaggy"? Is it wrong to suggest that changing attitudes, better education and medical care, and more interaction with actual disabled people may be leading some people to either decline prenatal screening for disabilities or to elect to continue with a pregnancy despite knowing the child is affected?

I find many of the comments on these articles and blogs disturbing in their libertarian fuck you attitude. There are many who resent the welfare state, and laws to make society more accommodating of disabled people. Dave Hingsburger had a poll on his blog recently. Like the majority of those who voted, I answered the question "the most frustrating thing about disabilities is..." with "the attitude of others." Is it any wonder?

2 Dec 2008


Duncan is really into his Roller Coaster Tycoon PC game. He's been trying for ages to recreate some of the Disney World/Land rides, in particular, Space Mountain. He kept showing me YouTube videos of these amazing versions of the rides, and bugging me to download them for him. I didn't know how or where to get the sets from. He's been going onto the Atari forums and scrolling through the posts. He showed me a few topics that seemed to help. It took me ages to piece together what I had to do though. It's not bad, what he managed to achieve. He typed his request, and found the relevant pages. He managed to read enough (and find the right images) to know when he was on the right track. He has tried so hard to make the coasters by himself, and he has designed some fabulous scenery, including a great version of Expedition Everest, with snow topped mountains and all. He has a great feel for how to use the program, how to build the walls and change the landscape. It's quite astonishing really.

Since I finally figured out where to get the set of files he needed to build Space Mountain (Mission 2) I helped him get the files in place. He asked me to help connect the multiple pieces, so I gave it a go. He was very disappointed with my efforts. I was sent away and he got to work himself. He kicked my ass at the game, building a beautiful, synchronised version of the ride using the well designed scenery of someone kind enough to share his work online.

I downloaded Google Sketchup (a cool, free 3D modelling program) and let him go to work, after spending a couple of minutes showing him some basic techniques. He knew what to do and had some ideas to try out instantly. The boy's got skills at stuff like that. Perhaps it'll develop into something marketable some day, but for now, he's learning loads through his interests and enjoys them. That's good to see.

Get outta the pool

It was just too cold. We managed to stay in for about 5 minutes. Duncan had me pull him around, going from side to side (good arm work out) and Lady obliged to play the role of the crocodile leading to squeals of delight when she closed in. But suddenly he climbed out and headed, hunched and shivering, to the stand of showers. I turned the shower on and he stood under. Thomas joined us, then Lady came to complain at being left alone. The boys wouldn't get back in. I told Lady I'd take her swimming one evening without them.

So we get dressed again and as I leave, I tell the man at reception that the water in the learner pool felt colder than usual, he said he'd look into it. It's probably just because the air temperature is so low. Well, it was a heck of a lot of effort for 5 minutes of swim time.

I'll have to find us another activity until the weather improves round here.

26 Nov 2008

So why do Disney World?

Why did we put ourselves though what I had a fair idea would be a difficult flight?

Here's why...
That makes sense, doesn't it!

If anyone's still not convinced, have a look at a few more:

See how excited Goofy is to meet my children! I bet that made his day.

He's such a handsome fella!

Look at that sky! After a two week long summer at home, we relished the perfect Florida weather.

This little guy was so happy. He absolutely loved the parks.

Lady loved the Pirate Pool at our hotel. She was a bit disappointed that we only went swimming once.

Duncan got so much enjoyment out of meeting the Disney characters.

I won't write a long, detailed report of our time in Florida. Well, I might do so later, but I'll give fair warning so people can skip those posts.

There are a few memories I want to share now though.

Before we left Ireland, I'd drawn up a detailed plan for the week, having researched the parks and working out what attractions were unmissable and what we could live without, as well as what would be suitable for the different tastes of various family members.

We all agreed that the holiday had to begin with a trip to the most famous park of all, the Magic Kingdom, which looked beautiful in the sunshine. Right away I went to the guest services desk to get a GAC (guest assistance card) for Duncan. He wanted to go straight to Toontown to watch the Barnstormer. After all, he'd been poring over the park maps for weeks and looking up all the rides on YouTube, so already knew what he wanted to do and see.

So going with me to get the GAC didn't sit well with his agenda and he was rather fussy as I approached the desk and told the nice lady what I wanted, reaching in to pull out some relevant documentation from my bag as I finished speaking. She immediately told me there was no need (to show her anything) and within a couple of minutes, she'd provided me with the card and a bit of red tape for the stroller, to show it should be treated at the attractions as a wheelchair. Result!

Over the week, the card was so useful, as was the ability to let Duncan sit in his stroller in the films and shows, and until he was just ready to board the rides. He was much more settled than he would have been.

The card allowed us to use Fast Pass entrances, or to queue away from the crowd, and always for a very short time. The longest we waited for any ride was about 15 minutes, for the excellent Toy Story Mania (amazing blend of high tech 3d and old skool pull-ball shoot-em-up with theming based on all the classic toys and games- one of the best) and that was only because there were 3 or so other groups with disabled people in front of us.

We went on every decent ride in each of the parks. Duncan's favourite was It's a Small World, and it's a testament to how much I love him, that I rode it 4 times with him.

He also loved the Carousel of Progress, a strange attraction for a boy his age to enjoy, being as it is, about the technological advances available to an American family at different points in the 20th and early 21st centuries. On one scene, there's a cuckoo clock on the wall, and it goes off, making the whole 30 minute, dialogue heavy show desirable to Duncan. Gordon proved his love of our son by taking him there 3 times.

Lady has developed a bit of a taste for the bigger thrill rides, and went on 2 of the bigger roller coasters, Big Thunder Mountain and Space Mountain. Thomas does not like coasters. He went on the kiddie coaster Barnstormer with me, and was utterly terrified. He asked me to give his opinion on my blog;
The scariest ride that I went on was Barnstormer. The least scary ride I went on was the Carousel. My favourite ride in the Pixar studios was Toy Story Mania.
That was from Thomas.
Duncan opted to just watch these things and loved it. After months of looking at the videos and recreating them as best he can on Roller Coaster Tycoon, as well as drawing them and setting his train tracks up to resemble them, he was once again in front of the real thing.

The staff were unfailingly delightful, smiling and helpful. We were always nice to them too of course, and very grateful for all their assistance. Once I was with the boys while Gordon spent some time with Lady. They were hungry so I took them to a cafe, ordered a couple of children's meals and tried to figure out how to bring them to a table while pushing Duncan. One of the staff offered to carry my tray, which helped so much.
We never encountered that kind of positive, generous attitude in Disneyland Paris.

We loved all of the parks for different reasons. We loved the lush Animal Kingdom, the gentler pace and staff who took the time to talk to the children and point out little trails and tasks they could do, the utterly gorgeous and beguiling effigy of Everest at one end of the park, and the musicians giving children a chance to bang their drums and have a go. Duncan told me his 2nd favourite ride was the safari bus. Gordon and I took turns to ride Expedition Everest. Just wow.

The Hollywood Studios park was bunged with folk there to see their favourite soap stars, an event which despite all my planning, I'd failed to notice clashed with our appointed day there. But it didn't matter, they were there for the (to us) unfamiliar celebrities, while we wanted rides and shows and our needs didn't clash. We watched the studio's spectacular Fantasmic evening show one evening. Duncan slept through the whole thing.

I'd love to go around Epcot without any children some time. There's so much to see and try there, if you can take your time and savour it all. But as it was, we all enjoyed the Test Track ride (fast, thrilling, just a bit too much for Thomas 2nd time around) and each of us but Duncan went on Mission Space (the easier option) which might be my favourite ride of all. It was especially good having watched the shuttle Endeavour launch just before.

Duncan was keen to go to Germany in the World Showcase section of Epcot, and kept talking about the cuckoo clocks he'd get to see there. I was worried that there wouldn't be any and he'd be disappointed, but he knew better than me.

The shop had a wall full of clocks and Duncan was in his element. He stood watching, enthralled for, oh, about five minutes and then the trouble started.

He wanted me to buy one of the clocks. These things started at about $200 and even if I was willing to spend that sort of money (I wasn't) they're not exactly the kind of thing you can throw in your backpack and carry around while touring a theme park. He started to kick off, so I had to take him out. I made up a story that Daddy bought the clock, and the lady in the shop put it in a box, took it to the post office, and sent it to Santa who will bring it to him for Christmas. Yes, I lied directly to my child.

(I have to get a deal on a cuckoo clock for Christmas now!)

He was not happy for a while after. I wrote out what I'd said and read it to him, letting him hold the paper. He just couldn't stop thinking about the clocks and wanting to go back to see them and to get one, but I couldn't let him do that. At least when we'd been in, the shop had only just opened so we were the only (potential) customers in it.

Again, we split up and I took Duncan ahead while Gordon took the others to watch a film about France (amazing and beautiful-Gordon, boring-Thomas). We ended up in the England bit, and guess what Duncan found in the toy shop- a load of Thomas the Tank stuff. He played for a while with the display train set and when he asked for a $14 wooden train, I complied and bought it, just to help take his mind off the clock. The man in the shop took the train to a back room to cut the packaging off for us, and Duncan tried to follow him. I found a toy policeman's hat, popped it on and said, "Stop in the name of Plod!" (It's a Noddy reference.) Duncan, either annoyed or mortified, gave me a look of disgust and said loudly, "I hate it when you do that!" prompting all the nice mums in the shop to look at me. As usual.

Just once I sort of forced Duncan to go on a ride when he didn't want to. In Soarin', you sit in a row, raised and suspended over a huge screen showing footage of California scenes from the air, and fans blow and you swoosh around giving the sensation that you're flying. He panicked when he saw the ride, thinking it was a coaster but I got him on it, knowing that he'd be fine when it started, and he really did love it, grinning and pulling his feet up when it seemed we were skimming the tops of a forest. As it ended, he said to himself (a quote from a film) "It was the best birthday ever!"

We went to out hotel pool one afternoon, and intended to go to the Blizzard Beach water park for a few hours one day, but it was just a wee bit too cool and windy for a few days, and then we were too caught up doing other stuff. Lady was disappointed by the omission, but didn't feel too bad since we were still having fun in other ways.

We bought lots of take-aways in the evenings and ate in the apartment as we don't do restaurants with our family, not yet anyway. We ate at a few of the park counter service places, but usually in 2 sittings so someone was able to keep Duncan busy while the other ate. A few places sold these huge smoked turkey kegs, very Friar Tuck. We liked those, even Duncan managed to gnaw on one for a bit, and since he mostly ate chips (fries) ice-cream and candy floss, his ingestion of a bit of protein pleased me greatly.

On our last evening, we went again to the Magic Kingdom to watch the fireworks. We were just in time to see the night time parade, with the cast and floats all lit up and looking so pretty. I pushed Duncan in his stroller to a small gap along the route, but he pushed the woman standing slightly in front of him, right on her bum. Oops! I apologised instantly, and catching sight of his badge, she laughed and said, "oh my son's autistic too!"

The fireworks were wonderful, but the boys had both had enough after about 10 minutes, so we walked back towards the park exit, looking around every so often to see the show. We made it to the exit just as it all ended and were able to get on the monorail (we loved this) to the car park right away before the crowds.

So, this seems to be a good type of holiday for us. Duncan enjoyed keeping a map in his hand at each park and knew what he wanted to see and do. Coming home, I was already thinking about what we could do for our next holiday, whenever that will be. Top contenders now are Legoland Windsor (and seeing our friends in London, brace yourselves) and Drayton Manor Park in the Midlands; it's even got a Thomas Land!

25 Nov 2008

Lung Cancer in Northern Ireland

This may be off topic, but I wanted to highlight an interesting article on lung cancer research in last Friday's Belfast Telegraph. The paper seems to run a decent health section, with fewer credulous reports than the average regional rag, at least since they stopped publishing nutropath Jan de Vries self-publicising nonsense. (Miche, what was it he charged for a 5 minute consult, during which he was abrupt and dismissive, and insisted that you buy one of his many books and herbal concotions?)

The paper edition carried a photo of the researcher quoted, and damned fine he looked too (biased...moi?) It's always good to read positive stories like this, and hopefully people in the region will have more hope for a better and longer life with lung cancer thanks to the drug trials now taking place in Belfast and around the world.

24 Nov 2008

Flying Virgin

We're back home form our trip to Florida. Everyone had a great time and we made many wonderful memories.

I wrote a short post from Gatwick airport before boarding the transatlantic Virgin flight. I may not have been so chipper then had I known what faced me for the next 11 hours or so.

Lady, Thomas and Duncan make themselves at home in the V-room.

The Virgin Atlantic staff were all wonderful and as helpful to us as possible. We were able to check in at the Premium Economy desk and were offered a couple of seats at a bulkhead with 3 more in a row across the aisle. I thought this would work out well for Duncan; a bit more space and no-one in front to be bothered by him pushing against their seat back. Wrong!

The boys playing with Lady's Gameboy just before we boarded. Duncan sits in his indispensable Major stroller.
(The Gameboy was lost somehow in getting onto the flight, and hasn't been seen since.)

Duncan expected that after a fun time on the V-room, we'd simply jump in a taxi and in a matter of minutes, find ourselves at Disney World. After all, that's what had happened when we went to Paris. He was adamant that he wasn't getting on another aeroplane and was saying, "no Virgin!"

I explained many times, just as I'd done at home, that we had to fly a long way to reach Disney World. He consented to board the plane and we tried to get settled in before most of the other passengers joined us. He was still a bit fussy when they were walking past and one charming man strided past, saying to me, "I'm glad I don't have to sit beside him." WTF? Jeez man I can understand that you and every other passenger would prefer on a 9 hour flight, to sit away from the loud, struggling boy, but do you really have to say it aloud to his already harassed mother? I thought of many fruity curses to throw back at him, but at least I had the decency to merely think them.

The badge I made for Duncan, and which he quite happily wore around his neck throughout the holiday.

Sitting beside us in the bulkhead seats, were a man with his 2 daughters aged about 4 years and 4 months. He was nice and understanding and his girls were a couple of sweethearts. Across from us were Gordon with Lady and Thomas, both of whom were perfectly wonderful throughout. They can see when I've got my hands full with Duncan's needs and curb their own devilment in response. In front of them was a row of three people in their fifties. The woman nearest basically stared at Duncan and me constantly for the first 4 hours or so of the flight. The couple beside her didn't stare for so much time, but made up for it with intense evil eye, head shakes, scowls and tuts.

Duncan was hard work. He wanted to use the toilet almost as soon as we'd taken off even though I'd taken him just before, his teeth were hurting as I think he'd bitten one of the hard lollipops I'd brought for them to suck during take-off and landing. The noise and crowds were obviously bothering him, a matter helped little by rubber neck woman and the other staring eyes. He cried a bit and shouted out a few choice angry phrases. At one stage the baby next to us cried for a while (as babies quite reasonably do) but Duncan matched her for pitch and bested her in volume. Oh dear. I tried to distract and comfort. I got him to watch Wall-E for a while, and we looked at some books. I drew a few pictures and coloured a rocket picture book. I offered the ear defenders I'd taken, and a blanket, cap and eye mask to reduce the stimulation, but all were refused. I worked really hard the whole time, and bless him, so did he.

Once when the grumpy two-some next to us gave a particularly nasty look at his distressed sounds, I called to them, "Please, he's doing his best." They lent back to avoid me, and I spoke to rubber neck woman, asked her to tell them what I'd said and added, "this is hard for him as he's autistic." She said that they didn't speak English. They were obviously fluent in the body language of disgust though. Gits. Rubber neck woman took the time to exclaim that I must be exhausted every night after looking after Duncan, after all, as she said, "I'm exhausted just watching him!"

"SO LADY, LOOK THE HELL AWAY, TURN YOUR DAMNED TV ON AND WATCH BATMAN OR SOMETHING," I felt like replying. Instead I explained briefly, as I really didn't feel like chit chat, that he was under undue stress and normal days are nothing like what she was seeing.

Eventually after about 6 hours of this struggle, he consented to wear Gordon's super duper noise-reducing headphones. By then it was about 10pm UK time and we'd been awake since 5am, so he finally settled and slept for a few hours. Phew.

Asleep, at last. Do I look worn out or what!

At Orlando International, we flew through customs and immigration, encountered staff who were all pleasant and helpful and I got a kick from being called ma'am. A few hours later than expected, we arrived at our hotel apartment, finding it large, comfortable and clean. It's a pity the few hours sleep Duncan had on the flight sustained him for a night of fidgeting and bed hoping!

And just in case any one's wondering, on the flight home, we arranged to sit in the rows of 3 seats alongside the galley area, thus reducing the number of passengers around us. Duncan sat between Gordon and myself while Thomas and Lady sat behind us. It was an evening flight and we'd been on the go all day. Duncan wore his cap pulled low over his eyes, ear defenders and had a blanket around his shoulders. I'd changed him into his pull-up nappy and removed his shoes. He cuddled me and Gordon gently stroked his feet and he fell asleep before the plane had even left the runway, remaining asleep for the entire journey, Yeah!

17 Nov 2008

Holiday Post 2

So we're in Florida, and for the first 2 days we had very high temperatures for the time of year, then they all started chittering on the local weather stations about The Big Chill, and it's gone all the way down to 65 deg F (18 deg C for those of us who prefer SI units). It's perfect for us.

We managed to witness the shuttle launch on Friday evening, though we were all shattered. But you just have to make the extra effort to see something so amazing. I just couldn't stop thinking that there were people inside that huge cylinder of fire bursting into the sky. It was terrifying and thrilling just to watch.

The parks have been great fun. We got a special pass for Duncan and the staff here are so lovely and can't do enough for us. We're really enjoying that USA friendliness.

I've only booked a few minutes on the 'puter here and then I'm going to get a few coffees to bring up to the room for breakfast before we all head off to Epcot for the 1st time. I'm really looking forward to it.

Hope all the gang at home who read this are OK and I'll call later to find out about G and the baby who'll be out any minute now!

13 Nov 2008

Live Blogging the Holiday!

We've been up since 5am, got the taxi to the airport at 5.20, landed in Gatwick at 8ish and are now in the Virgin Vroom, whiling away the hours until we can board our Orlando bound flight this afternoon.

Duncan was a bit worried on the flight here. His ears hurt and he panicked a bit about landing, calling out loudly a few times that we were going to crash when we landed. He wasn't interested in my reassurances that we had a very able pilot looking after us. When we did land (very smoothly) he grinned and said, rather surprised, "we didn't crash!"

The Vroom is perfect for this gang. Gordon is on kid duty for now. There's a soft play area where the boys are currently launching themselves off foam structures and crashing into each other. Thankfully, there are no other children in it!

We've had bacon rolls and coffee, and the children have helped themselves to juice and croissants. We'll be here for a few hours yet, but I can think of worse ways to spend the morning. There are loads of terminals and we've all been checking out our favourite sites, the play room id helping burn off the crazy amounts of energy the bunnies possess, there are a few games consoles, and as much food and drink as we want. It's well worth the fee to come here.

So anyway, we'll arrive in Orlando at 6pm EST, get the hire car and head to the hotel/apartment thing. Tomorrow we'll hit the mouse kingdom, bur best of all, we're lucky enough to be in Florida while a shuttle launch (Endeavour) is planned. Obviously, no matter how tired we'll feel, we're going off to get a closer look at that tomorrow evening!

I'll update when I can.
Keep well, and don't let the cold, wet weather bother you too much!

6 Nov 2008

Politics of the people

People can change things. America has shown us so. I stayed up really late on Tuesday night/Wednesday morning to watch the results of the US presidential elections, enjoying the company of some fellow bloggers. I was delighted with the result. From what I've seen and read about the candidates, Obama is by far the better in his policies, aims and intentions. People have chosen the candidate who is clever, accomplished and well organised. His campaign was fantastic especially when compared to the nastiness of McCain's. I'm glad there will be no more McCain "my friend" speeches nor any of his nonsense about autism, and I am glad the majority of Americans showed their opposition to the global screw ups his party have made, and that awful Palin woman.

It's obviously wonderful to have an African American family taking up residence in the White House. I think that people all over the world who are of a minority race in their home country, will be happy with this. I know Gordon has been deeply affected.

I listened to Obama's victory speech live and warmed to his inclusive address to people of all racial backgrounds, to gay and straight people, disabled and non-disabled. How about that?!

But, closer to home, the Irish government has just announced their disgusting decision to scrap HPV vaccines for teenage girls due to budget shortfalls. Even if times are hard, this is a terrible decision and is a real let down. The HPV vaccine is the only medicine yet developed that acts as an effective preventative measure against a form of cancer. I live in Northern Ireland so my own daughter will still be vaccinated when she's old enough, but what about all her cousins? I have 5 wonderful nieces living in the Republic, they all deserve this protection too.

"An angry person" by Duncan. It's how this decision makes me feel.

Via Red Mum I read that people are being encouraged to write to Mary Harney, Minister for Health, telling her how they feel and attaching a photo of their daughter (if they have one). We've seen that when enough people are motivated to make a change, it can happen. Lets see if the Irish people can effect this small but important change.

It's a shame about California and Prop 8 though.

4 Nov 2008

Fun all over the planet

I took the children to a travelling fun fair last night in Belfast. Duncan was especially keen to go, associating Halloween with Planet Fun, even more than (as he calls it) "tricks and treats".

Gordon's been at a conference since Saturday. I asked Duncan if he would write him an email. He typed the 1st sentence and dictated the rest, and this is what he said:
Dear Daddy

Now Duncan is a cute boy. Daddy was a good man.

Duncan is drinking hot chocolate and playing Dogz 4 like a demo.

Tonight is Planet Fun from Halloween in Granda's apartment. We're
going to look at the Mad Mouse from Halloween.

Duncan loves Daddy the best boy in the whole wide world.
Gordon was able to receive his emails while sitting in a meeting, and somehow from his response, I think he liked it!
I love you Duncan- your letter made me so happy.

I hope you have a fantastic time tonight at Planet fun

I love you very much

Your Daddy

That night I loaded the children in the car and we set off into the cold, dark night. We parked at my Dad's place since he lives near the huge, ugly building hosting the fair, and I fueled myself with a bowl of pasta then hit the noise, lights and crowds.

I was very concerned about losing Duncan, though even if he had managed to sneak off from sight, I'd have a good idea of where to find him. But it definitely was more stressful for me to be out at night among so many people with no other adult on hand. Lady and Thomas were instructed to keep together and stay near me as I knew Duncan would be liable to dash off to whatever caught his eye with no notice. I even took a photo of him just as we arrived in case I had to give his description to any security staff, paranoid or what?

SO for all my fears, we had a good time. Duncan was pleased to watch one of his favourite coasters, the Mad Mouse, and then his siblings rode the Caterpillar Coaster/Wiggly Worm or whatever it's called. He enjoyed watching them from the otherwise deserted back end of the ride, and racing the train as it went.

He chose to go on the animal train and since there were few young children around by then, he rode up front and rang the bell ecstatically all the time.

It made him so very happy, and that made us all happy. The fella working the ride looked like he'd had a sense of humour bypass though.

They went on a few more rides, Duncan again choosing one usually favoured by the under five age group, and Lady and Thomas enjoying something a bit more thrilling.

Today I worked for a while on planning an itinerary for Disney World in Florida. We're leaving next week and are psyched about it. I dare say the parks will have a bit more to offer than the particular brand of fun and thrills available last night in Belfast, even if they're are much less easy to access.

23 Oct 2008

Make a splash

Image via stock.xchng

Tuesday is swim day. We go at lunch time when the learner pool isn't in use by school groups.

It's not so long since Thomas was nervous and clung to me in the pool, tolerating only short periods in the water. Now he wears goggles and swims over and under with true dedication and joy. I can usually manage to give him one helpful tip per week to improve his doggy paddling, bum in the air, legs splayed swimming style, but he tells me he doesn't need my help and he can do it himself. He's right, he is getting about well enough and is getting better and stronger each week.

Lady takes my advice slightly better and she swims now in a sleek, smooth manner, her long limbs pulling through the water. We raced a length last week, and she kept up with me, though I was looking backwards every second stroke to check on Duncan.

Duncan just loves it and grins the whole time we're there, even enjoying the showers after. He has me pull him as he holds a float. I try to do a life saving stroke as I drag him along but he's the wriggliest and bossiest rescue subject ever, and insists that I swim faster and go from left to right. I tell you, I certainly get a work out anyway.

One of Duncan's favourite things now is watching people go off the diving board in the adjacent diving pool, and the bigger the person, the better the splash. Last week, a very large man made him very happy by repeatedly plummeting off the board, creating gratifyingly gigantic turbulence in the pool. Duncan couldn't withhold a little shout of glee each time the big fella went off.

He emulates in his own small scale way, jumping from the poolside very carefully so as not to make a big splash or to go underwater. Sometimes he enacts a little pantomime of stretches and toe touching before he goes in, muttering the script from a relevant episode of Tommy Zoom.

At 1.20 a school group arrives and we retire to the baby pool for a few minutes to watch them. Duncan likes it when they all sit on the side splashing their legs back and forth creating lots of noise and white water. He joins in from where he sits. About thirty school children are crammed into a pool which we four usually have had to ourselves for the previous 45 minutes. Lady can't help feeling a bit sorry for them as they are restricted to a narrow strip about 10m across and must follow instructions to the letter.

Ah the delights and freedom of home education.
Smug...us? Just a bit.

20 Oct 2008

Denis Leary- too funny!!!

Omigod did you hear about how funny Denis Leary is? I know he's been like, really boring and all for the past few years, playing serious drama roles and providing a voice for one of my own little moron's favourite kiddie films. So it's just marvellous to see him try to recapture his rebellious youth when he did brave and edgy shows like No cure for cancer in which he went on stage and drank beer, smoked and bawled out a litany of respectable targets in a most amusing and radical manner.

I suppose it's a mid life crisis thing, and he wants people to remember him at his Bill Hicks impersonating best, so he's written a book and it sounds like the most amazing, riotous, revolutionary tome. It's called "Why we suck" and again he gives 'em hell, lancing the inflated egos of those who put themselves in the spotlight, people like Hilary Clinton, Dr Phil and, er, those pesky disabled children.

This great comedic talent wrote:
There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can't compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don't give a fuck what these crackerjack whack jobs tell you - yer kid is NOT autistic. He's just stupid. Or lazy. Or both.
Diego the sabre tooth tiger from Ice Age with a self-portrait of Duncan.

Try not to die laughing just now.

When this short exert was publicised (by whom?) many people complained, among them parents with autistic children. Sadly many of the complaints tended to be like this: "How can you laugh at autism, it's devastating and a tragedy?! Just come live in my house for a day and see how it's nothing to joke at!!"

Bleuch. The problem isn't laughing at autism, it's just how pathetic and unfunny Leary has been.

Then Leary himself went and got all offended at people using their right to express their distaste at his words, by saying that the protesters hadn't even read the book and the quote was taken out of context:
...I not only support the current rational approaches to the diagnoses and treatment of real autism but have witnessed it firsthand while watching very dear old friends raise a functioning autistic child.

The point of the chapter is not that autism doesn't exist - it obviously does - and I have nothing but admiration and respect for parents dealing with the issue, including the ones I know.

The bulk of the chapter deals with grown men who are either self-diagnosing themselves with low-level offshoots of the disease or wishing they could as a way to explain their failed careers and troublesome progeny.

Of course, this entire misunderstanding can be easily avoided simply by doing one thing-reading the book.

Aw get over yourself Leary. I don't care if you acknowledge now that autism exists, even if you do qualify the statement with talk of "real" autism, as opposed to what; leprechaun autism? It's great to know you're onto the huge numbers of autism malingerers out there too. We parents of REAL autism kids are so relieved.

I wonder how the context of the nasty quote could make it any less offensive. Perhaps the preceding excerpt was, "Some people use autism as a platform to spout about all sorts of nonsense. They push their spectacularly idiotic ideas about "greening vaccines" or claim massive conspiracies exist to cover up the poisoning of children. Many claim they know what causes the condition, be it wifi, dog shampoo or milk. Others jump on the bandwagon to sell dubious and even dangerous therapies to deluded parents, or run schools that administer electric shocks to children for minor transgressions. Then there are those, who clearly haven't a decent thought in their shrivelled up brains, and who make low jibes about autistic children and their parents, saying horrible, hurtful, inaccurate and plain unfunny things like..."

I don't know how else it could be taken in context and not be all wrong.

Leary's book has lead to a few amusing moments though, not least when Jenny McCarthy rushed out to capitalise on a bit of self-publicity and with no insight into the destruction she was effecting on irony metres the world over, called Leary "obviously stupid."

It won't be a surprise to anyone to hear that I won't be reading his silly book.

17 Oct 2008

"I exist" in Northern Ireland

The National Autistic Society launched their "I exist" campaign for recognition of the needs and views of adult autistic people at Stormont yesterday.

For my first time at the parliament building, the sky was startlingly blue as I made my way through the security posts to the revolving doors, location for some of the most cutting edge performance art the world has seen.

The launch was held in the prosaically named Long Gallery, and was so well attended that there was standing room only during the presentations. I was hovering around looking a bit lost, according to the two kind souls who offered me a seat beside them near the front. I ended up sitting two rows behind the four MLAs and right next to Mark Lever, the NAS chief executive with whom I had a brief chat.

First to speak were the politicians. I took notes as they spoke so can share my perceptions, though none of what follows is necessarily totally accurate. This is no Hansard report. I'll put my own thoughts in italics.

John McCallister (UUP) wishes for politicians from all the parties to work together on these issues. He acknowledges there is too little known about autism and that the state needs to work on the delivery of services to support adults. He called for the release of funds to support human dignity.

Iris Robinson (DUP) spoke as the Chair of the Health Committee. She said she's been interested in supporting people with autism for many years and visited the USA in 2007 as part of a cross party group with PAPA to find ways to meet their needs.
She said there's a need to get Statements earlier for children and mentioned that autism is diagnosed in the USA in a different way using a £1 million set of equipment called a MEG scanner.

(I looked up MEG scanners today since I'd never heard of them and they sound like a cool bit of kit, with SQID detectors and stuff that excites the usually dormant, medical-physicist parts of me.)

So back to Iris; she reckoned the high cost of a MEG scanner is justified by the high number of children with autism in NI. It would soon pay for itself as it could be used for people with epilepsy or who have had strokes or brain injuries as well as people with autism.
She finished by saying that we need to have a strong and inclusive voice and that education and social needs are especially important.

(I don't know how MEG scanners are being used to diagnose autism. They may play an important part in understanding he condition but I don't know if the limited funds available should be used to pay for one here when the need for basic support services in education, health, accommodation and employment is so great and underfunded. Also, is there really a centre of excellence in neuroscience where such a device could be put to best use, in NI?
Also, there was nothing in this speech about the needs of adults.)

Carmel Hanna (SDLP) spoke of the need to educate all of us to end confusion on autism issues, and said that we're all learning to listen to carers and parents about what it is like to live with autism. She said that the majority of adults with autism live at home with their parents which can cause stress and isolation for the parents, who can benefit from exchanging views with others in the same situation. She also told of the autism families who worry and dread the future and called for further training for health professionals. She said that the SDLP meets many parents and that they have a bigger lobby, and worried that older autistic people fall through the cracks in the services available and their physical and mental health can suffer, as can that of carers affected. She finished by calling for consolidation of services and said that her door is open to those needing support and help.
(The views, needs and worries of autistic people themselves were given much less prominence than the concerns of parents.)

Michelle O'Neil (Sinn Fein) was unable to attend due to a family funeral, and wanted to convey her support for the campaign.

Keiran McCarthy (Alliance Party) spoke last and said that he had little to add to what the previous speakers had expressed. But he added that autistic people need support, especially from the departments of health, education, employment and transport but from every other department as well so they can receive the same facilities as everyone else. He complained that various departments shy away from a joined-up approach meaning people lose out. He believes that early diagnosis of the condition would highlight the degree of spectrum (not sure he used the word spectrum here) to work out what provision is needed.
He wished we could do more to ensure all people enjoy a fulfilling and exciting life like you and me.
He finished by quoting from the report (showing he at least read some of it) that all are extremely valued and wanted people.
"I commit to ensure this."

Mark Lever showed a short campaign film then spoke briefly about the aims of the campaign. He told how "low level" (and presumably cheap) support services have made a huge difference in the lives of some people. He said that gaining services is often a battle when it should be a right. He believes that if we can make people aware of autism and its impact, then more people would be keen to act to improve things.

He was followed by Regina Cox who highlighted the findings of the NI report showing that many people haven't got a clue about autism. (This is no surprise.)

Regina then introduced Jenny McCleave, a young, autistic woman who read a few extracts from a short book she wrote for her family. (I have no notes for the next two speakers as I was so engaged by them that I forgot to write anything down.) Her contribution was incredibly moving. She spoke clearly and simply about her struggles to be heard and taken seriously. She wasn't diagnosed as autistic until she was (I think) 18 despite telling those around her for years that she knew she was autistic from the descriptions she read of the condition. She was always told, no Jenny, there's something wrong with you but it's not that. She was so frustrated and isolated that she considered suicide, and her diagnosis was a relief and vindication of what she'd known for years.

She spoke too about love and how people like her are capable of love even if they don't show it in normal ways. I, like the women sitting next to me, had tears in my eyes by the end of her short presentation. I felt so for the unnecessary suffering she's undergone, and wondered again how it is that people are so blasé in claiming that autistic people lack empathy when the truth is often the opposite.

Another autistic speaker called Rob Devlin spoke for a time. Again he described the difficulties he's faced as a child, the bullying and awful time he'd had a various special schools. His diagnosis didn't come until he was 14. He now lives at home and aged 29, is trying to get work as a voice-over artist. (He does have a wonderful voice.)

The event ended with a talk from Geraldine Banner, described on the programme as, mother of Noel, an adult with autism.

As she spoke, a huge photo of her son was displayed on the screen. I don't know if it was a particularly unflattering photo of the young man, but it felt a bit exploitative to me.

She started her talk with the words, "autism is a life sentence with no parole" (which jolted me, I thought it was a disrespectful choice of words) and said it affected the family and extended family. She said that her son is severely autistic and non-verbal. He was at a special school but the placement failed when he was about 13. She contacted the Camphill school near Belfast but they didn't ahve a place for him so they got him a place in a Camphill school in Scotland. He was there for about 8 months but that too failed, "due to his autism". She found out about another residential school in Scotland and visited it, was impressed and determnied to have him go there. She drove back to NI from Scotland with her very distressed son in the back seat, went to see a psychiatrist in Derry and though she said the doctor advised against it, had her son admitted to hospital (I presume she meant the psychiatric hospital) while she got her MP to secure funding for him to go to the residential school in Scotland. He had a difficult start and displayed self-injurious behaviour and aggression towards the staff and his peers. But he battled through adolescence and recently celebrated his 21st birthday with family and friends and it was a fantastic experience.

She wondered why there are no services available in Northern Ireland.

So ended the event.

I spoke for a few minutes to the chief executive, continuing the conversation we'd started before the presentation when I'd asked if he knew if any adult autistics would be there and I asked if they thought about showing videos by other self-advocates. He told me about various videos he'd seen and other pieces of art that represented the voice of people who wouldn't be comfortable enough to speak to a crowd or engage directly in events like this one. I asked him if he'd seen Mike Stanton's presentation at the NAS conference about the Autism Hub, he had and he commended Mike's work.

I didn't get a chance to speak with anyone else in any detail.

Before I left to pick the children up from their grandmother's, I joined a tour of the building led by the UUP MLA. We headed into the debating chamber where DUP MP Sammy Wilson was talking to a group of school children (who looked utterly bored). He talked about the role of the speaker and how debates work and asked if anyone had a question. I wanted to ask, Mr Wilson, as Minister for the Environment, have you any evidence for saying, "I am not convinced and I don’t think that there is any firm evidence to show that all of that climate change is due to CO2 emissions." Further, is there any chance you lot will be getting back to work any time soon?
But I held my tongue.

So that's what happened. I have lots of thoughts about it all, some good, some bad. I think the aims of the campaign are sound and support them fully, but I worry that the ends don't always justify the means and there's still a lot to do to get people, even those presenting at an autism conference, to think differently about autism.