11 Oct 2010

Blog Update

This post might be a one off. Time will tell.

Each of the children are now attending school full time. Lady (now 12) started secondary school in September. It is going well for her. She had been concerned that she would find the work too difficult and didn't fully believe my assertions that she would cope well with everything expected of her. She lacked confidence in her abilities and thought my judgement of her worth wasn't objective enough to trust. She now knows for herself that she is smart, a good learner, flexible, social and far more organised that even I thought she'd be and this has boosted her self esteem. There are aspects of school life that she dislikes and many that exasperate me but the current system means that if you chose the school option, you get these things along with it. Lady is happy and the advantages for her and all of us outweigh the disadvantages so to school she goes.

Thomas (now 8) is in the same primary school he started just after Easter. He is happy too. He is so dedicated and conscientious, he works hard and still loves PE best. Like Lady he had made new friends. His school is across the road from a country train station just one stop away from the station 10 minutes walk from our house so he takes the train to and from school on his own every day. He enjoys the feeling of independence and personal responsibility.

Both of them are still in the gymnastics squad. Thomas left the men's artistic team and like Lady he now does acro gymnastics and tumbling. Lady is also in the cheerleading team and competes in an all-Ireland competition later this month. They are thriving.

Duncan (10) is also at school- one for children with severe learning disabilities so he gets the right level of adult support. I could not be more pleased with the school, his teacher and the other classroom staff. Duncan adores it and talks about it all the time. He tells me about his friends in the class and what they do each day. He is having a total blast. Today he will have gone horse riding for the 2nd time. The report back in his home-school diary last week was that he is a natural and loved the whole experience. He thinks he's Cowboy Woody so here's hoping he doesn't try to gallop off! Not just yet anyway. Every Friday they go swimming. They have had a magician and the Ulster Orchestra to perform for them. They've been on outings to the airport, to sheepdog trials, to the wetland centre and aquarium. Duncan loves going places.

I was prompted to write today to record the meeting myself and his dad had this morning with Duncan's teacher about his individual education plan. His teacher is obviously a perceptive person as she is utterly enchanted by Duncan. She realises he is very capable academically and is keen to encourage and enable him to be the best he can be. She thinks his little animations are so clever-she says that she is convinced that one day he'll be famous! - and that he is such a loving, happy and kind boy. She talked about all the ways they are helping him to progress in his self control, communication and understanding. It was a most positive and helpful meeting. I only just realised that neither of us mentioned the word autism once- we didn't need to. We both know that Duncan's autism is just part of all the amazing, astonishing, at times infuriating and always awesome way that he is so we only needed to talk about him and his environment and how to reduce the barriers he faces to be well.

Here's his latest video.

26 May 2010

Creationism in the Ulster Museum?

I just listened to an interview on Radio Ulster with Nelson McCausland, the minister for Culture, Arts and Leisure (DCAL). The minister has written to the trustees of National Museums Northern Ireland saying he believed they and his department both "share a common desire to ensure that museums are reflective of the views, beliefs and cultural traditions that make up society in Northern Ireland." On today's radio interview he spoke with Richard Dawkins who phoned up to predictably assert that creationism is bunkum and doesn't belong in the museum, and while I agree with his first point I'm not so sure about his second.

The Ulster Museum is a great place to visit and there's loads to see and learn from, especially their exhibits on natural history, art and local history. I think a temporary exhibit on the ideas held by the people of this region would be an interesting addition provided all the main displays continue to reflect the facts of evolution and what we have been able to discover about how the earth and universe were formed via the scientific method.

A display on the mythology of the people might be fun, if not absolutely hilarious. It could reflect research on just what beliefs on our origins are actually held here, where they have come from, how many people hold them, how these ideas have themselves evolved and why. Then have the notions of creationism/intelligent design clearly laid out for all to see. Since the minister is keen to uphold the human rights of the people he represents by having their beliefs and opinions displayed, then go ahead. Alongside the views of the "Cdesign Proponentsists" the human rights of the 70% or so of people here who do not believe in this theory must also be protected, so have a display on all the proofs for evolution and refuting all the claims of creationism/intelligent design.

"The truth may be puzzling. It may take some work to grapple with. It may be counter intuitive. It may contradict deeply held prejudices. It may not be consonant with what we desperately want to be true. But our preferences do not determine what's true." Carl Sagan.

28 Mar 2010

Repost from the bus on Irish Blog Awards 2010

I've got free wifi and a bit of battery time left so here's the short, link free version.

In summary, it was excellent. I didn't win the best blog post award, but had zero (well not zero since that would be mathematically illogical since I was nominated) expectation of getting in and the winning post (and winning blogger) was a stunner. Best part of the experience as ever was spending time with a load of intriguing, articulate, provocative and funny people.

Myself a selection of other lovely ladies meet in the presidential suite of the well posh g hotel for the Ladies Tea Party, organised by the force of nature that is Sabrina Dent. We had lovely pink wine and delicate snacks and there was nail painting and nail polish remover and it was all fabulous. The women I met with, some I knew already but most of them I hadn't, were without exception amazing, friendly and warm. I had my nails painted a vampy deep red, most unlike me it was. But I have to admit, they looked good with my blue dress. The didn't even get too damaged as the night progressed, and neither did I(!)

The awards were distributed efficiently and I was especially pleased by 3 wins; Red Mum for photoblog, Irish Autism Action for group blog and Xbox for personal. The best part of the evening followed with all the chatting and a little bit more drinking (mostly tea) into the morning. The clocks went back depriving us of an hour of either sleep or fun. I chose less sleep. Eventually I made it to my bed for a few hours sleep.

Today I joined a few more bloggy types for brunch in a pub and now, knackered, I'm facing the long trip home. But sure I can read for hours uninterrupted. I don't really mind this voyage.

Links and maybe more spouting about this to follow, probably.

26 Mar 2010

Westward Ho

It's the weekend of the Irish Blog Awards and I'm off bright and early to Galway tomorrow morning to join the party. Amazingly, I'm a finalist in the best blog post category for a post I wrote last June when Duncan and I had spent a beautiful few days away together, just the two of us. It's a post that flowed out of me, one that expresses my feelings of love, pride, contentment and joy in my child. I'm really happy it was selected to be among the final few posts, astonished too! But it was a lovely surprise in a downer of a week so thanks very much to all the judges for getting it this far. I hope a few people will have read it and consider that parenting a disabled child isn't less than, just different.

Here's the list of posts in the category which is sponsored by KRO IT Solutions
I know which one I think is the best among that lot and hope it wins tomorrow.

But the prizes are a very small part of what makes the blog awards great. It's the chance to meet people and chat, eat, drink, laugh, renew old friendships and make new ones. It's just a great big party. I am looking forward to it very much.

I CAN'T Wait

Duncan had another appointment with the dentist this morning. Lady and Thomas have both started school now (more on that later- but it's going well) so it was just the two of us. The 1st time we were at that dentist it was a huge struggle to get him in the building. He stood outside crying for ages while I tried to reason with him. We made it into the waiting room where The Tweenies was playing on a tv, henceforth that room was known as "The Tweenies Room." Duncan utterly refused to leave the room so the dentist came to him and after Thomas modelled the procedure, Duncan consented to allow the dentist a brief glimpse inside his mouth right there. On the next visit he made it to the examination room but not onto the chair, though he did enjoy moving the stuffed dinosaur with the big teeth up and down on the chair. Then the dentist got another kick look but didn't see much. Today however Duncan was an absolute star. We entered the Tweenies Room and he dashed about a bit checking out the books and wall posters, seemed pleased that there was no smoking allowed, then got ready to leave again. An old woman and a younger man, probably her son, arrived. The man might well have been autistic himself. Duncan was restless and I said several times, "we will wait."
"I can't wait!"
"Look at the door, read the sign. This is a waiting room."
He read it and seemed a bit happier to do what the sign said, for a while at least. He got ready to move again and I said, "wait for a little while. The dentist will be ready soon."
Duncan replied softly, "I don't want to wait. Listen to me, pal!"

I just asked him about the book he had picked up. The woman most have had very acute hearing as she snorted a bit then said, "oh, that's a strange thing to say."
Now was thinking that her sticking her nose in was strange, but reasoned that she might not have known better and said, "it's a phrase he picked up from a video. He doesn't know what it means." (I regret saying that with him right beside me now.)
"Well one thing I will say, in my day we respected our parents."
"That's nice. He respects me and I respect him too."

We were called to the dentist then. I suppose I should be glad she only felt it was her right to comment on my son's words and wasn't tempted to stick a pen into his or my eye unlike the wish expressed by a "home-schooling" mother I read about on Liz's blog. This "christian" (I won't capitalise the word, this woman doesn't deserve it) clearly hasn't heard about "suffer the little children." It's hard to believe she could possibly be so ignorant about autism as she obviously is for unless she's living as part of an able-bodied people only cult, she surely knows of other non-school educated families with autistic children; there's loads of us out there!

But forget her, my boy did well today, Lady and Thomas are settling and happy in their new school, I'm off to Galway for the weekend. It's going to be just fine.

22 Mar 2010

It's not the reward

Last week after his gymnastics class, Thomas came to tell me that he'd managed to do a back flip without help and on the floor. He was very proud of his achievement. Lady also "got" her back flip (to use their terminology) a few weeks ago. As I'd done for his sister, I shared his joy, expressed my pride in his hard work and hugged his beautiful and strong little body. Later when I was downstairs I noticed a new gymnastics trophy on the shelf. "Oh that," he said easily,"I won it today for getting my back-flip."

I was really happy to see he had taken more pride in sharing the accomplishment of the move instead of the reward, relished the intrinsic satisfaction and not the extrinsic prize. Just getting his back-flip was all the reward he needed.

Wish I'd been less focused on the praise and the prizes when I was his age and I might be less influenced by how I think others see me now.

21 Mar 2010

Trying School

Lady and Thomas were taken by their dad to visit the local Integrated primary school last Tuesday and both liked it so much that they decided they would go to try it out. So after I spoke on the phone with the school principal, we've arranged that they will start this Thursday so they go for a couple of days before the Easter break. I'll be visiting the school myself tomorrow morning to look around and meet with the P4 and P7 teachers to talk about what they do and to tell them about my children.

Lady's decision came as a complete shock; she announced a few days ago she wanted to visit the school with the others. She had previously always been adamant when questioned that she was not at all interested in going back to school for the foreseeable future. But she just realised that she wants to try out primary school again before she's too old. So, fair enough, off she goes.

Thomas has been thinking for a while about going to school for the first time in his life. He'd originally said he'd start next autumn term so we could all enjoy the summer together instead of being stuck in a classroom for the few months we have a year when the weather is half decent. But after seeing the school he changed his mind and wants to go right away.

We're trying to decide how best to arrange how to travel to and from school. It's one stop away from here on the train and they could easily manage to travel there and back together but I have a notion that wouldn't be allowed by the train company; unaccompanied minors etc. They could walk, cycle or use a scooter and go along the coastal path. Or I could copy almost all the other parents and drive them there.

I hope they enjoy this experience. I still think home education is a better way for children to learn; school is so very inefficient and takes up such a huge portion of children's lives, especially when you consider that even after they have spent almost all day in school, they then have homework to do. I don't know how the children will manage all their activities; Tuesday - Thomas has gymnastics then jujitsu, Wednesday - they both do gymnastics, Thursday - Lady has 2 gymnastics classes and Thomas goes to Beavers, Friday - Lady goes to the local youth club and the gymnastics coach told me yesterday she wants Thomas to start a class on Fridays soon, Saturday - Thomas does jujitsu and hurling and Lady has cheer leading, Sunday - Thomas does gymnastics. How are they going to have time to spend with their family, go to school, do homework, continue their sports and activities, play and hang out with friends, chill out and read/watch tv/learn an instrument/master a computer game/draw a picture/write a letter or blog post? How does everyone manage without bursting from the pressure?

I do want them to enjoy it and to gain from the experience. They are free to remain at school if they so choose, but if, having given it a good couple of months, they decide they want to be home educated again then they will be deregistered. This is not now the most straightforward of manoeuvres as some of the education boards are trying to fool parents wanting to home educate that legislation exists (it doesn't) to prevent the deregistration process.

I am keen to know exactly what they make of the whole thing, and think that for Thomas especially, he'll either love it or hate it. I don't expect him to merely tolerate it. Lady only wants to go for one term but she may discover that she wants to go on to secondary school too in which case I will have to try to find a place for her in one of the schools not requiring a pass on the transfer test.

I'll be here for them no matter what and boost them and help them know what they need and how to get it. Duncan and I will have more time together and that's always nice, though he may be going to school some time soon himself. Until he does (if he does) he's going to miss his siblings terribly.

Elf Spotted in North Down

This afternoon, I was driving with Lady and Duncan when Duncan said something that had us roaring laughing. A woman crossed the road in front of us and Duncan, sitting in the front passenger seat beside me looked at her very closely, brow furrowed. Then he announced, clearly referring to the woman, "it is NOT a human."
I protested, "It is a human!" (I found myself using the same pronoun as him, he uses the gender pronouns interchangeably anyway.)
Duncan disagreed. "No. It is not a human."
"Well what is it then?"
His empahtic response;"it is an elf."

I could see why he thought that. The woman had short dark hair, was wearing a furry sort of pale coat and had very red cheeks. She did have a bit of the elf (like those in the film Elf) about her. And Duncan was deadly serious, thinking he'd just pointed out something as obvious as if he'd shown me a white van or a black bird.

It was a nice wee bit of sunshine in the day.

3 Mar 2010

Words, language, attitudes and actions

There's a campaign to encourage people to rethink the words they choose to write and say. Today, March 3 2010, has been chosen as a day to focus on these issues.

Words matter, language matters. When people decide to use as slurs and insults, words that originated as diagnostic labels for various disabilities and/or for various categories of mental illness, real and manufactured ("hysteria") then they contribute to a culture that marginalises people. Disabled people are dehumanised by these words. A society that tolerates the use of slurs like r*t*rd and sp*st*c as equivalent to stupid, useless, pathetic, hateful or annoying, legitimises the hatred that leads to the abuse, murder, forced drugging and sterilisation and discarding of so many disabled people in this country and all around the world.

Some people whine about the "language police," "PC gone mad," their "right to free speech" and how "no one has a right not to be offended." They make a case to keep insulting, belittling, minimising and dehumanising people like my son who have developmental disabilities just so they can slag off their mates or sound hip and cool on someone's blog or YouTube comments. But if someone wants to keep acting like an entitled and callous arse, that's their call.

There's a fantastic series on Ableist Language at the FWD/Forward blog discussing specific words, their origin, the damage they can do and suggesting alternatives. As expected, the usual arguments in favour of the right to offend and destroy and display your laziness and lack of consideration say whatever the hell you want are raised. These are deconstructed in this great post.

There's one argument the non-creative who prefer to keep right on insulting and degrading developmentally disabled people use that isn't in the list. It's the "euphemism treadmill" argument, and it's explained in this blog comment;
This sort of process (words becoming offensive and being replaced by new terms that end up becoming pejorative over time only to be replaced by more and more cumbersome and ridiculous expressions and so on and so forth ad infinitum) is known as the euphemism treadmill. And people who keep insisting on keeping this treadmill going are fucking retards (I hope the actual innocent retards forgive me for using this innocent word pejoratively).
The Blog owner responded to this inanity with, "Fucking right!"

Can I have a facepalm?

OK, that's me shut up then. I wouldn't want to contribute to the "euphemism treadmill." Keeping all hip and raging against the PC police is far more important than listening to the people whose lives are directly negatively affected by your words and committing to making a few simple substitutions.

My understanding of what this commenter calls the "euphemism treadmill" is the positive effect of disability activists who have influenced the language used to describe people with their attributes. "Wheelchair bound" is out because people who use wheelchairs find the term fucking ridiculous and limiting. If people who are blind prefer not to be referred to as a "the blind" and people who have epilepsy quite reasonably don't want to be called "epileptics" then should those of us who are not in these groups get all bothered by their "disgraceful assault on our right to speak as we see fit"? Should we return to a more paternalistic era (as if this one's not bad enough) when we allowed doctors, psychologists educators and others with power-over to dictate the terms used to describe people, or might it be seen as fairer that, as people gain more agency over their lives, they and only they have the moral authority to dictate the language used to describe these lives.

There's more about this on Here Be Dragons post; Ban the R-Treatment:
A lot of people think that The R-Word campaign is just about a disablist slur, but it’s the medicalization of atypical learning and social behaviour that’s dehumanizing, hence the basis of all slurs for people considered inferior are medical terms which caused the euphemism treadmill in the first place.
Another thing about the previous comment is the distinction made between the "fucking r*t*rds" behind this drive to substitute language that demeans with the language of their choice and the "actual innocent r*t*rds" whom s/he hopes will forgive such pejorative use of this "innocent" word.


They're the same people, these "innocents" and the ones who annoy you (and confuse you?) so much with their attempt to improve they way they're discussed and to stop people using using their discarded diagnoses as the epitome of the put down. And what makes them "innocent" anyway? They're almost all adults so in all likelihood, they're as much of a sinner as you or I! I hate this trope that developmentally disabled people are seen as innocent and child-like even when they're full grown men and women. It's another way in which they're dehumanised.

If you want to, go ahead and use r*t*rd and similar terms as insults. I reserve the right to think of you who do as arrogant, rude, insensitive twerps. To the rest of you who might decide that on reflection, it might be decent to chose other words that don't have such power to hurt and harm, please pledge your support to eliminate the demeaning use of the r-word.

27 Feb 2010

The Princess and the Frog

The film was released here just after we left for our holiday and it had been out for so long in the US that it was no longer shown in most cinemas. So keen as were (me and Lady anyway!) to see this, we just had to wait until we got home again. So a few days ago we headed off the local cinema for a bit of old fashioned Disney animated goodness. Now I am aware that Disney films are not all peachy and contain heaps of patriarchy pushing and much outright racism but I like, even love most of them, flaws and all. OK so Ariel has some twisted ambitions, Cinderella is so wet and pathetic and Belle falls for a creature who locks up first her dad and then her and shouts and is cruel, but I'll overlook these things, they can happen to any of us.

As usual in the cinema I sat by Duncan. He took a while to get involved in the story but I fell for it right away. It looks beautiful and Tiana is such an engaging, feisty character. I didn't care much for the prince, even after he'd been improved (as is always the case in these films) by his association with our smart wee waiter woman. Having watched a few of the preview trailers last year (and following some of the controversy about how race was depicted in the film) I was dreading the appearance of the firefly Ray but he was lovely and his love of the star was sweet and his role at the movie's end really touching. The bad guy, who uses the spirits to advance himself and whom we know will meet a sticky end before the credits role, was well realised too, and the spirits were bloody spooky and menacing.

We all enjoyed it. I liked the music and Duncan definitely favoured Ray. So much so that when an unfortunate event occurs near the end, he was really saddened and even angered and said very loudly, "Where is Ray?" He was properly concerned. I tried to comfort him with some theory or other about where Ray had gone but he saw right through me. Then he declared, "Ray is not a star, get Ray back NOW!" Thankfully the cinema was almost empty, but even if it hadn't been, I hardy think his expressing deep feelings about the action would have bothered anyone. He cried for a while later that night and I talked to him about it all. Then he said he wasn't sad any more and that was that.

I was predisposed to like this film. I have to admit I did want to see a beautiful black woman become a Disney Princess in a classic tale and moreover, for my brown-skinned daughter to see someone other than the typical Disney gal depicted. On our last morning at Disney World we happened across the Tiana and Naveen characters meeting people. There was a short line so see them so I approached to wait too but was told they had closed the line and asked to return an hour later. Too bad I thought. But then the staff member (cast member they're called over there!) decided to allow us on in. So a few minutes later the children were meeting Tiana and Naveen who were absolutely lovely and chatted with them for ages. Lady did OK with handsome Naveen's arm on her shoulder all along while Duncan had the pretty lady (and he likes the pretty ones!) hold his hand all the time.

We big people joined the children for a photo next and I positioned myself next to the prince.

When we'd finished they walked off regally, the Tiana character waving and smiling at all the gobsmacked little girls. It was sweet and I am not so cynical that I didn't get a warm feeling when a little girl of 4 or so stopped to stare at the princess who looked like her.

25 Feb 2010

Orlando Holiday: Part 1 The Flight

We rose early on Tuesday morning and piled cases, wheelchairs and bodies into the car bound for Dublin airport. Once parked and in the airport, we'd only a short wait to drop of our bags then through security. So far, so fantastic. Duncan used his wheelchair (occasionally recreationally- see video!) though he did jump out every so often before sprinting after whatever took his fancy. No doubt folk observing were wondering what we were about, but sure, we're used to that!

We were delighted to spot my sister at the departure gate. Now we had the full crew the holiday really was on course. When the plane was ready we were allowed to board early. Duncan sat at the window, me to his right, his dad and Thomas in front (in case he kicked the seat!) and Lady and my sister across the aisle from me. It was just right. Best of all each passenger had a personal entertainment system in the seat back. Duncan started to watch Disney films straight off, with his ear defenders over the ear phones.

The Aer Lingus crew were fantastic. After take off we were told that the empty bulkhead seats were ours for the taking if we wanted them. We decided to stay put, even though they had more leg room, since it wasn't worth disrupting what was working so far.

Before long Duncan opted to simply listen to children's TV theme tunes and soon after that he set his screen to show the route map which he followed for hours! The journey took over 9 hours and in all that time he was just as perfect as I could possibly have hoped for. As always, Thomas and Lady were helpful and relaxed, and enjoyed the films and games on offer.

Just one incident marred the experience. Sitting behind me were 2 elderly men whom I presume from their accents were from the USA. They both slept for a few hours. Unfortunately I was assaulted at regular intervals by the most foul stench of someone's intestinal gases escaping and the pungency and direction of the attack strongly suggested one or both of these dudes was the culprit. But hey, when you're on an aeroplane you have to put up with whatever you're next to so I set the air blower things in my row to maximum and tried to breathe through my mouth. Then a couple of hours before landing Duncan started to move the window shutter next to him. He put it up, then a minute later shut it, and for a while he played at opening and closing it. He wasn't making much noise and the shutter wasn't shared with another row. He wasn't causing any harm and I was keeping a close eye to see if I needed to move him on to something else. Then I heard the men behind us talking and they were complaining to each other about the shutter thing, saying they wished he'd make up his mind and leave it alone. I was a bit surprised and caught my sister's eye. She sighed and rolled her eyes at the cranky old guys. Then I heard something I couldn't ignore. The one behind Duncan said (and I didn't catch it all exactly) "...I'd choke him..." and I knew he was referring to Duncan. I said to my sister who looked outraged, "did I just hear that right?!" She said that yes, she'd heard him too. I turned around and looked him in the eye, "excuse me, what was that you just said about my son?" He wasn't so forthright when he was challenged; "oh, nothing...I was just talking about the light. It's OK."
"You were talking about my son. He is disabled, he is autistic and he is doing the best he can. In fact, he is being bloody fantastic."
"Yes, yes. It's OK."

I wanted to say something to the crew but since I wasn't sure what else he's said, besides I'd choke him which I'd heard loud and clear, I left it. But I was a bit shaken. It was extra nice when a few minutes later another old Irish man who was queuing next to our seat for the sandwich sale, started chatting and asked about Duncan saying what a great boy he was. Better yet, 2 of the crew approached me to chat and commended Duncan in the most complimentary way saying he had been just wonderful and he was such a credit to us and what a lovely, happy child he is and it was a pleasure having us on board. Mr Nasty can't help but have heard.
My sister told me later that she'd heard the whole thing clearly. He'd said, "if he was my son I'd have choked him by now." Cruel sod. I pity the children he may have had and hope karma bites him hard on the ass.

But onwards. The descent was hard on Duncan. His ears hurt and despite our best efforts (together with kind offers of sweets and olbas oil drops from the crew and other, nicer passengers sitting close) he couldn't or wouldn't take anything. I just held him and whispered comforting words and he cried until he were almost down. But this too passed. We disembarked and were able to go follow airport staff through the disabled passengers' line at immigration. We even had a friendly immigration officer! We were all tired out but managed to keep it together until we'd got our cases (both times) and picked up the hire car.

We'd more than survived the journey, we'd enjoyed it.

30 Jan 2010

We're NOT supporting Andrew Wakefield Facebook Group

I started a group on Facebook for everyone who wishes to record their opinion on the Andrew Wakefield GMC rulings. Anyone who is/is closely connected to an autistic person is especially
welcome. Join here:

Parents and autistic people supporting GMC rulings against Andrew Wakefield

I want to show that we do not all support Andrew Wakefield who despite the damning verdict against him, is unrepentant and said in his recent statement "It remains for me to thank the parents whose commitment and loyalty has been extraordinary."

The newspapers writing about the guilty man also refer to his support base and in some ways imply that parents of autistic children are more inclined to stand behind the disgraced doctor.
Please join the group and spread the word to show how we really feel about a man who has been found guilty of a disgraceful lack of ethics, a "callous disregard for the suffering of children" and who has done so much to denigrate autistic people and increase the spread of preventable infectious disease.

28 Jan 2010

Andrew Wakefield Verdict- Guilty

The General Medical Council has ruled that Andrew Wakefield, one of autism's most notorious False Prophets and quintessential brave maverick doctor is guilty of having "showed a callous disregard" for the suffering of children and has "abused his position of trust."

According to The Guardian's report:

Wakefield also acted dishonestly and was misleading and irresponsible in the way he described research that was later published in the Lancet medical journal, the GMC said. He had gone against the interests of children in his care, and his conduct brought the medical profession "into disrepute" after he took blood samples from youngsters at his son's birthday party in return for payments of £5.

The doctor, who was absent from today's GMC hearing, faces being struck off the medical register. The panel decided the allegations against him could amount to serious professional misconduct, an issue to be decided at a later date.

It's a damning verdict. This man should be ashamed of how terribly he has used autistic children to make a name for himself. He cares more for the adoration of the deluded and confused who flock around him at the autism quack conferences like he's Jo Jonas or something thinking his use of their children means he cares or can help. No one should let this man anywhere near their children, autistic or not. He has caused a shit storm of harm to autistic people by leading the troops describing the condition as vaccination damage, with all the negative rhetoric they propagate. Thousands of parents were confused by the reporting of his crappy paper and his lack of dignity and honesty in refusing to admit that it was a fair cop even when it came out in public that he'd totally fixed his results. He is responsible for so many people choosing to avoid vaccinating their children; the subsequent rise in measles cases caused death and disability in children when it could have been avoided.

Watch out, autist about

What do people think of these as potential T-shirt/badge designs?

Duncan worked on his own design; a version of Chuckie Finster's favourite shirt. He's put it on his own blog here.

Edited to add:
Here's the design Duncan came up with all by himself. I only typed the words he told me to.

Cool eh?!

27 Jan 2010

Forest Tracks

We took a walk through the forest. Duncan elected to ride in his wheelchair. It's just the right size for him and he's pretty comfortable in it, thank goodness. It's not really designed for forest tracks but as long as we kept on the bigger and smoother paths we were fine. He got out and ran about now and then too, and they all had a good splash about in the burn. Lady told me stories about all the forest residents; fairies, sprites and goddesses in the trees and water and the two warring werewolf tribes, the protectors and the flesh eaters. Apparently ivy and holly repel the flesh-eaters and the few scraps of cloth we spotted caught in the bushes were left over when the wolves transform. She and her cousin A. thought all this up, with the help no doubt of Harry Potter, Twilight and I think, some Enid Blyton stuff thrown into the mix.

Duncan trying out his wheelchair. Though he looks kind of worried, he was very content!

Duncan was wearing an old pair of Lady's glasses. They have blue frames so help him look more like his hero Chuckie Finster

Lady and Thomas test their wellies and prove that so long as the water doesn't rise above the rim, your socks stay dry.

Duncan finds that chucking stones into water can be a most satisfying pursuit.

The dog was in heaven dashing about sniffing out the holes and burrows and avoiding the water as much as she could. I panicked a bit when 3 sheep ran out on the other bank close to her: they must have got out of their field. Thankfully she came to heel and I was able to clip her lead back on without her running after them. Poor Duncan was a bit stressed but soon cheered up when we set of in the direction of the Spar and he got his hands on the first Creme Egg of the season.

Later Thomas had gymnastics for 2 hours; squad training. He came out with yet another trophy. We joked about how all this winning was just getting boring now. Then I took him off to his 2nd Tuesday class, an hour of jujitsu. Lady has dropped this one but Thomas still loves it. He's a green belt now. I can see him sticking with it all the way to black. He's an ambitious wee lad, and hard working, unlike his Mam.

26 Jan 2010

Dear passengers on EI121

So you've all booked a flight from Dublin to Orlando and luckily, you've chosen to go at the same time as me and my family. Some of you will, like us, be heading off for a bit of a holiday and hoping for sun, heat, roller coasters and perhaps some time at the home of the world's most famous rodent. It's likely that some of you will be travelling for work and others may be visiting family or returning home. Whatever the reason, I hope it's all good for you.

I'm sure you understand that this route attracts many families with young children who are incredibly excited to be going on holiday to Disney World, and for whom the long flight can be quite a trial. I suggest that if you don't wish to be disturbed by their chatter and the hopefully infrequent but inevitable tears and tantrums, that you pack ear plugs or invest in some noise cancelling headphones or even upgrade to business class. I hope your flight will be as pleasant as possible but young children and older people with disabilities exist and must be at least tolerated and hopefully even respected.

It's likely that I will board before you. Most airlines allow these small accommodations to reduce the stress on people like my son, caused by lots of waiting about. So when you're walking down the aisle and see the skinny boy who might just be kicking up a fuss about something, you can feel relief that you're not sitting next to him if you want but please, don't stop to tell me so like one heartless git did last time we flew. If you do find yourself sitting in our vicinity, well sorry. I promise you that all of the people in my party will be doing our very best to distract, entertain and if needed, reassure my disabled son. Know too that the child himself will be doing his best to cope with what to him can be a difficult situation.

You may think that people like him shouldn't fly if it's so difficult for him. I disagree. Flying is not an activity reserved only for adults and non-disabled people. We're all at liberty to travel so long as we abide by the legal requirements. It's important that we try to be as respectful and polite as possible to those around us but if my son shouts at times, that doesn't mean he can't fly.

Last year there were a few stories about parents and autistic children being removed from planes before take off. I read and was disgusted by some of the vitriolic commentary about these incidents. There were those who advocated bashing the kids against seat backs and throwing them out in mid-air. Apart from these extremists, there were many who just whinged about how their right to peace and quiet was disturbed by children and "mothers" (rarely fathers) who expected to be treated as saintly just because they'd given birth. I don't think that's the case. I'm sorry to say that when you're in a public space you have no right to peace and quiet, especially not when you're trapped in a moving can in the air. You have a right to travel in security and safety and as much comfort as is possible. But people of all kinds exist and they have to get about too.

So instead of judging, rolling your eyes and tutting (like one couple did last time) or staring (again, we had this last time) or getting pissed off at me for putting my son's seat back when he finally fell asleep (as the man behind him did last time- he actually pushed the seat back up! I let him, I was too worn out by then to protest) I have a radical idea- why don't you try a smile, and ask, "is there anything I can do to help?"
That would be truly heroic.

Know also it could be worse. I flew to Portugal with my sister last August. There were a few children in front of us, one of whom cried a little as we landed. That was fine: children sometimes cry and the parents were doing their best to comfort the little one. Behind us though were a group of people travelling together who yapped loudly the whole time, their braying voices forcing all around them to hear all about their exploits, and it was Too Much Information! Worse yet, someone kept farting and I was tempted to pull out the oxygen mask to have some clean air to breath. I was so relived to step off that plane.

Enjoy your flight!

Sharon xx

Social Story Video for Flying with Duncan

Duncan has been a bit anxious about flying to Orlando. He's been asking that we fly with Flybe and Virgin, the 2 airlines we used last time when we flew via London. He kept saying, "no Aer Lingus!" and I didn't push it. A few nights ago I was lying beside him in bed and looking at pictures on my laptop. He was looking on. I started looking at Aer Lingus aeroplanes and he asked to have a closer look. Then he wanted to watch videos about Aer Lingus so we YouTubed for a while; ended up watching a cheesy ad I remember from my childhood, showing the cabin crew as comely maidens clad all in green and the pilots as dudes of a certain age; abounding in wisdom and reliability. In fact as soon as you got on board, you were as good as home.

Duncan enjoyed it anyway. He'll probably be asking me to download the soundtrack for The Mission next.

Yesterday I asked him if he would help me make a film about going to Orlando. He agreed so I powered up Windows Movie Maker and sat by him. He immediately suggested the appropriate music, "Here comes the sun" by The Beatles. He's used that song before! I thought it was an excellent choice so we went on from there, adding text and pictures. He insisted on including the train picture at the end!

(I've already ordered the train from ebay so will slip it into our luggage and take it with us to save the stress of trying to find it out there. I only hope it's enough to distract him from his original idea of buying a cuckoo clock at Epcot- so expensive and delicate!)

22 Jan 2010

Planning for Disney World with Autism: The Flight

We've done this before so I have a better idea of what I need to improve to make this flight across the Atlantic as painless as it can be for everyone. Last time we flew via London and Duncan was fine on the first short flight from Belfast but very distressed on the second leg of the journey. He had it in mind that once we arrived in London, Disney World would be just a taxi drive away. (This was a reasonable assumption since it's what had happened when we'd gone to Disneyland Paris.) The flight was delayed at London and we had paid to wait in a lounge (Virgin V Room) with good facilities for families. I'd hoped that as Duncan played about loads in the soft play room, he'd be tired and fall asleep on the plane. But he didn't even want to board the cavernous and to him, scary Virgin plane. I'd opted to sit in the bulkhead seats with him thinking that we'd have slightly more space and no one in front to be bothered by his kicking their seatback. These seats are sought after and were allocated to us because of Duncan's disability. However they were a bad choice. We were sitting next to a baby who cried which upset Duncan. The little girl sitting next to me had a packet of sweets of higher value to Duncan than the hard lollies I'd packed for him to suck. We were also exposed to the rude and contemptuous stares of strangers all around. Duncan fussed and whined and occasionally wailed for HOURS and the poor child was so unhappy. I was worn out and the attitude of other passengers near us added to his distress and my stress.

Before boarding the return flight, I had him sit in his stroller and I pushed him about the airport for ages until the plane was ready. It was an evening flight and I tried to keep stimulation to a minimum. We opted for seats in a row of 3 alongside the galley which reduced the number of other people near us. Duncan sat between me and his dad and the other 2 children had to sit alone beside a stranger behind us. I knew that I had to have Duncan surrounded by people who cared and protected from the looks and tuts of paediaphobes/disabled people haters. It was an evening flight and he'd had plenty to eat and been active all day, but was chilled out and relaxed from being pushed about in the stroller. I'd changed him into comfortable clothes and brushed his teeth. When we sat on the plane, I cuddled him and his dad stroked his feet and he fell asleep before we'd left the runway. Success!

This time I have planned like a general. I've booked a flight from Dublin direct to Orlando so no transfer worries. I plan to take some of his absolute favourite sweets and snacks. There are times to worry about healthy eating but when you're in a metal box hurtling along 12km up in the air, that's not the time. Just do what it takes to get by. I will have DS games and his Gameboy. I will fill my Ipod with his favourite movies in case the in flight entertainment is inadequate. I am making him a book showing exactly what will happen at each stage of the journey from leaving our home to arriving at the villa. He will have a travel bag with some favourite small toys and books as well as colouring pens and a notebook in case I need to write out or draw further instructions. We have arranged to sit so as to have Duncan as sheltered from strangers as possible. He will have ear defenders and a neck cushion.

Duncan has outgrown his stroller but he still needs a safe place to retreat to and I need a way of reducing his tendency to run off. I have just received his new and long awaited wheelchair. It's just the right size and will enable us to have a much more relaxed and enjoyable holiday. I've informed the airline of his needs and that he'll be using a wheelchair until we get to the plane. It will make navigating the airports that much easier. I will also use his autism alert card to show any officials who can help us get through the potentially tricky security and immigration rituals.

Best of all my sister is coming with us this time so there'll be 3 adults and 3 children so everyone will be well cared for. I want this to be fun for him and the others, so I will try to be alert but not stressed. Hopefully all this planning will help me strike the right balance.

Tell you what, I can't flippin' wait!

17 Jan 2010

School options - SLD

I spoke with an educational psychologist on Friday about school options for Duncan. She thought one of the schools for children with severe learning difficulties (SLD) would be best for him so he would get the highest level of support. These schools are not autism-specific but contain pupils with any condition, physical, sensory, emotional or neurological that impedes the child's ability to learn. I admit I was surprised for a minute or two since Duncan is well able to learn but on reflection I agree that if he was to go to a school, he would need a high adult to child ratio with well trained and experienced teaching staff. She said that although he is able in many ways he is "very autistic" and that his behavioural problems would make it difficult for him to "access the curriculum." She knows other autistic children who are like Duncan in many ways, who have the same problems with impulse control but who are bright and curious and who have done well at one of these schools. Duncan has done well at home having had a lot of individual attention and when we go out he has virtually one-to-one attention from me so to give him the best chance of succeeding in a school, the transition needs to be as easy as possible with the highest levels of care and support that would only be available in a SLD school.

I will go and visit the schools and speaks to the principals and teachers. I need to find out how the approach problem behaviour, check they don't use restraints and discover as much as I can about how they operate and whether I would be happy enough for my son to go there.

15 Jan 2010


I've been thinking for years about how to deal with some difficulties I face. This has taken so much of my time and energy, it's drained me. I've had no desire to blog while this was foremost in my mind. But thankfully now I have reached a decision I can be...well not happy about, but confident that it's the right one. It's a huge relief to know for certain and to start now making plans to move on with a new phase in my life.

I have missed blogging. I enjoyed keeping this record of my children's development and the silly stuff we get up to as well as sharing my opinions on autism/disability/home education issues with anyone who chooses to read them. It's been an important outlet; writing posts here has often concentrated my mind, forcing me to research issues to be able to write with some knowledge and understanding. It's been a way of making contacts around the world with people with similar interests and of connecting with others writing about their own lives and areas of expertise. I love reading blogs and even when I wasn't writing my own I have continued to read the blogs I've subscribed to, though I've very rarely commented on any. I have stopped reading a few that were just starting to piss me off with their lazy stereotyping, especially those with sexist and (all too often) disablist writing. I just don't have the energy to witness that stuff.
It means I stay away from many mainstream comment sites like CiF on the Guardian and the BBC websites- shudder.

Today I will meet with an education psychologist from the local education board. I want to investigate schooling options for Duncan. I'm not sure whether or not I will enroll him in a school again but will think about it seriously and figure out what he prefers. Thomas too is thinking of starting at school for the 1st time in his life. Lady has no desire to be schooled. I will support their choices.

I'm tired but getting by. I can be proud of how the children are thriving; obviously I am more than coping, despite the fact that my home is only rarely tidy and there's a long list of home repairs needing to be dealt with.

Also, the whole family is lucky enough to be going to Disney World for a fortnight in February. I'll be sure to see that the children have a fabulous time. It'd be very hard not to!