The Voyage

Books by the Boy

noreply@blogger.com (Sharon) — Mon, 23 Jan 2012 22:14:00 +0000

Lately the boy has been drawing and editing pictures using his huge cast of characters to tell stories. He's fascinated by heroes and villains and works through his ideas via photos, videos and drawings. He made a book by printing out the following pictures, cutting and tapping the pages together. It looked perfect. I wanted to store and share these pages Duncan (to resurrect his old blog name) created. He is Robin 3D/Ryan, his friend is Zunarmy/Isaac and his brother is Sezon.

Front cover

Cast of characters

Newspaper Article

noreply@blogger.com (Sharon) — Sat, 02 Jul 2011 07:50:00 +0000

I'm copying the recent article here as I don't expect it will stay on the newspaper's website for long.

Sharon Fennell and her son Ryan on a flight to Orlando last year

Published on Thursday 30 June 2011 09:12

A local mum and member of the National Autistic Society Northern Ireland wants to help other parents/carers of autistic children get the most out of the school holidays and increase people’s understanding of autism. HELEN MCGURK finds out more

SCHOOL summer holidays can present a real challenge for parents of children with autism in Northern Ireland. People with autism often encounter significant barriers in communication, social situations and making sense of the world around them.

Co Down mum Sharon Fennell whose 11-year-old son Ryan has autism explained: “The schools here close for two months in the summer. While we can use this time to meet new people, and enjoy new experiences, many children with autism rely heavily on a routine and the change can be disorientating. Some children and young people find coping without their normal routine frightening and upsetting

and for many, the sensory overload can sometimes be tough for a child with autism.

“Parents of a child with autism want them to have a fantastic summer but when days don’t go so well you can feel isolated and even a bit of a failure. I’d like parents of a child with autism to know that there are at least 35,000 mums and dads in Northern Ireland who have similar experiences and great advice to share. Many of them are members of the local Northern Ireland branches of the NAS.”

Sharon has a request for people who may not be aware of the condition.

“Sometimes when you’re out and about in the holidays and your child is confronted with the unexpected or when they are overloaded with sensory information, they can panic and react in quite a dramatic way. It can be difficult when it happens in a public place. Autism isn’t readily visible, so to an outside observer it can look like your child is just being naughty when they are actually struggling hard to understand what’s going on around them.

“Some people stop and stare and even make thoughtless comments while you are busy and doing your best to support and calm your child. Their disapproval only adds to what can be an already difficult situation. When we’re sharing public spaces it would be lovely for people to understand that people of all kinds have a right to exist and be out and about.’’

Sharon added: “If more people understood and knew about autism, they would recognise what is really going on when my child is struggling, they would see that he is not merely “bold” and appreciate that he and I are doing our absolute best in tricky circumstances. That would so much more helpful than judging me or my son. It would be lovely if people could show a little more kindness, smile, and maybe even ask, “is there anything I can do to help?” That would be truly heroic!”

Sharon has some simple advice that can help families get the most out of the summer break.

“My top tip is to create some type of structure for the holidays.

“It helps my son to have an idea of what to expect each day. We write all our big events like holidays, birthdays, summer scheme days and when school starts back on the family calendar and he likes to look ahead and get an overall picture of what will be happening. His father lives in a different house and it helps him to know in advance when we will be staying there so all this information is marked on the calendar so he can access it.

“Each evening, we talk about what will happen the next day. When he was younger and had less verbal ability, I would draw pictures describing the day ahead in comic strip form. I’d sometimes also use picture cards and photos attached to a board with velcro or blue tac. As he got older I was able to write a list of the day’s tasks and events. It still helps him to have this list to focus on.’’

Sharon said when going places it pays to prepare and plan ahead as much as possible.

‘‘It helps to make sure I will be able to get my son food he enjoys or to bring some with me. I like to know possible problematic areas; when he was younger it was difficult to go anywhere that sold pic’n’mix sweets and he thought those plastic jars and scoops were an open invitation to small sticky hands and keeping him away was difficult.

“Some places allow carers to enter free when accompanying a disabled person; it’s always worth asking what discounts are available. When we go somewhere busy like a theme park, I tend to dress Ryan in a distinctive top that I would recognise from afar. I made a few t-shirts with slogans that inform people of his autism in a positive and funny way, or he may wear a lanyard around his neck with his NAS membership card on one side and my phone number and a slogan like “awesome autistic dude!” on the other. These help people to recognise that this child has a disability and I find the vast majority of people are more considerate and sensitive when they are aware.’’

Shirelle Stewart, co-director of National Autistic Society Northern Ireland said: “Children with autism want to have friends, go on outings and have fun in the summer holidays, just like any other child. Acceptance and understanding from the public can make holiday times less stressful for children with autism and their families and help them get the most out of their summer break.”

The National Autistic Society Northern Ireland provides a wide range of advice, information, support and specialist services to people with autism and their families.

For further information contact: 028 9068 7066 or email northern.ireland@nas.org.uk

Hey Johnny Ball, how about an apology?

noreply@blogger.com (Sharon) — Thu, 31 Mar 2011 09:40:00 +0000

Hi Johnny, old friend.

You've been leading those poor gullible journalists a merry dance, haven't you, you old rogue?! Perhaps you never expected them to be so lazy that they wouldn't check what you claimed and learn for themselves that it was much ado about nothing? But what can we say, they're probably humanities graduates, can't be doing with all that old evidence nonsense eh!

How did you come to find my blog post anyway? A Google search of your name didn't link here in the 1st 4 pages and I gave up after that, you must have gone deep to get to that post! I admire your stamina. But somehow, you came upon my (as it was) retired blog. It would be obvious to anyone that it's hardy influential; presidents and popes don't hang on my every word. Well you dug deeper than any journalist and found it. But if your quotes to journalists or the content of your own blog on what it contained are anything to go by, you didn't read the post. If this was an English comprehension test, you'd have failed. See, on the post, a commentor wrote that you are "not a man who should go anywhere near children with [your] ideas. [You are] not a man of reason and evidence but a ranting old lunatic."

Now I don't fully agree with that, but a I tolerate a certain amount of dissenting opinion on my blog. The person who wrote it is entitled to think that if s/he wishes and it wasn't so extreme an opinion that I was unwilling to host it on my space. That person thinks your ideas on climate are so unscientific and extreme that you should not be given a platform to express them to children. I dislike the disablism of the "lunatic" slur. It's inaccurate and unfortunate but that's anonymous commentors for you.

No doubt it bugged you to be described as such. Perhaps you were offended at my characterisation of you as a "silly old duffer" and "cranky in [your] old age"? You've been in the public eye for decades, I'm sure you know celebrities and those in the public eye are subject to criticism. It's not all fawning admiration all the time.

But unlike me, you have the ear of the mass media and you jolly well milked it. On Feb9 2011 you wrote on your blog:

on a Northern Ireland Blog, The Family Voyage, which prides itself on winning some Blog Award, flagged JohnnyBall and featured the statement, “Johnny Ball should not be allowed near children.” Being near to children has been my career for over 50 years. As yet I cannot contact them, as their site is only open to known members?? (Their flagged Johnny Ball link has now miraculously disappeared)
Their beef is that I dared suggest in 2009 on NI Radio that Sammy Wilson as Energy Minister was right when he refused to air “Carbon Trust” TV commercials, one of which showed a very young child being told a story of a drowning world through climate change. Following complaints to the Advertising Authorities, these ads were found “guilty of exaggeration and alarmism over climate change” and were ordered to be dropped. So that would indicate that I was totally justified in condemning them?

Anyone who knows me and my career, must know that I have never done anything that in any way would harm a single child.

I defy anyone to find anything that I have done in my career that, were it publicly known, would harm my reputation.

You lied about the content on my blog and you lied saying the link had disappeared. You went on to lie to the newspapers; the TES, the Daily Mail, the Guardian, the Daily Express, the Daily Telegraph- all quoted you making similar slurs about the blogger who supposedly implied that you're a paedophile. You mislead these poor precious journalists into thinking it was part of a blogger campaign against you, carried out by some climate change lobby. You lied also when you implied that my post was removed after a police investigation. I was never contacted by the police and the post was never removed.

So Johnny, are you going to go public again and make this right? Or stick to the lies?

(I have emailed a copy of this post to Johnny Ball Productions. )

Identity

noreply@blogger.com (Sharon) — Wed, 30 Mar 2011 12:43:00 +0000

I was driving with just Duncan in the car with me. He was quiet, taking time to dream, ponder, plan or whatever. I don't know- it's none of my business. Then he said a single word, "autism."

I said nothing, just waited. He said it again. I said, "yes, autism...What is autism?"

His response; "charming and delightful."

I've often mentioned in passing when talking with him, that he is autistic, is a boy with autism. It's another facet of him like his curly hair, blue eyes and love of animated films. I've also told him over and over how wonderful he is, how he's perfect to me, funny, sweet, and yes delightful. I can't remember ever calling him charming but he just worked that out for himself.

I love how he is thinking about these parts of his identity- where he lives, who his family and friends are, where he belongs, and now also- he's figuring out that there's autism in there too. And he's embracing it. I'm proud of him.

Celebrate the New School

noreply@blogger.com (Sharon) — Thu, 24 Mar 2011 18:49:00 +0000

So how about a charming anecdote?

Today, Duncan's school held a sod cutting ceremony to mark the start of the new school building project. This is a really big deal- the building was approved 9 whole years ago but finalising funding was held up time and again. The current school buildings are totally inadequate- most classes are in flimsy, temporary buildings and the whole site is on a steep hill- and since many of the pupils are wheelchair users, that's just not good enough. So everyone in the school is really pleased that finally, the school the students need and deserve is to be built.

Duncan and I were invited to join the staff, other parents and pupils and some invited special guests for the event. Duncan ate a few sweets and was happy to see some of his friends and teachers, but then got a bit overwhelmed by the crowds in his hall and was bored waiting. He entertained himself for a while looking at photo displayed- even pointing out a girl whom he says is his girlfriend and will be his wife. I wonder what her opinion on all this is?! He then entertained himself taking photos using my phone- stick a bit of technology in that boy's hands and he happy. He showed me a picture he'd painted depicting his version of what the new school should contain. He reckons there should be an oboe room (he's big into oboes atm), a "sweety" room, a pool (hot and with bubbles) a studio (where he could make animated films) and a cinema (in which to screen them).

Eventually I took him out and we waited in the car. The people all moved on to the building site. Not knowing what parking would be like and since it was a lovely day, Duncan and I walked- rather he ran "Gru style" (Despicable Me) and I just about managed to keep up.

In the site, pupils and teachers gathered for photos with the mayor and other dignitaries. Not Duncan- how could he when there was a huge and fascinating green digger to look at. He ran about the field for a bit and I dashed after him. Then he was given a blue balloon which after a while he let go of accidentally- and was momentarily crushed when it rose into the clear sky. He looked at me, seriously scared and asked "the world will not end?" I assured him the world would not end, and he decided that the balloon would either turn into a fairy or go to the fairies. When I heard there was to be a mass release of the remaining balloons I thought it was best to just go home.

So it was nice but knackering- as time out and about with Duncan so often is. What I enjoyed most was the obvious affection with which he was greeted by so many staff and other pupils and how he clearly adores them in return. There's a lot of heart in that place.

Guardian Journalist Explains

noreply@blogger.com (Sharon) — Thu, 24 Mar 2011 08:55:00 +0000

After posting yesterday on the Johnny Ball fiasco, I had a conversation on Twitter yesterday with Leo Hickman who wrote the 2 Guardian articles regarding the imaginary hounding of Johnny Ball. His first article was Let's join Johnny Ball in condemning extremists in the climate debate.

Shortly afterwards, due solely to the more clued up people who responded in the comments and who took the couple of minutes needed to check the claim wrt the wicked paedophile-labelling blogger, Hickman wrote an update to his post: Johnny Ball denies 'climate zealots are ruining my career' claims.

Here's how it went.

@sharonf Hello Sharon. Just seen your new blog about all this. Looks like you've seen my updated blog too.

#1 [x] 4:43pm Mar 23rd 2011 via web in reply to sharonf

leohickman

Leo Hickman
@leohickman your updated blog still gives space to Ball to say I made "derogatory statements..totally out of order..blogs disappeared" untru

#2 [x] 8:04pm Mar 23rd 2011 via web in reply to leohickman

sharonf

Sharon Fennell
@sharonf But it provides links thru to u 4 readers 2 c what was really said on yr blog. Ball is 1 who doesn't come out of this well, not u

#3 [x] 8:17pm Mar 23rd 2011 via web in reply to sharonf

leohickman

Leo Hickman
@leohickman I'd hv wanted MSM journos to read blog in 1st place-not after commentors told them. appreciate link in 2nd article- despite ball

#4 [x] 8:20pm Mar 23rd 2011 via TweetDeck in reply to leohickman

sharonf

Sharon Fennell

@leohickman u say don't want to be "drawn in" to blogs being deleted or not. think journos shld have contacted me before publtn- right reply

#5 [x] 8:22pm Mar 23rd 2011 via TweetDeck in reply to leohickman

sharonf

Sharon Fennell
@sharonf I say in my blog I had no reason to doubt him - I stand by that. Ideal world, we wld check evrything, but readers did detctive work

#6 [x] 8:26pm Mar 23rd 2011 via web in reply to sharonf

leohickman

Leo Hickman
@leohickman ideal world! wld hv taken 2 mins to check his assertion, before ur original piece- it's on his blog. he wasn't vilified by me.

#7 [x] 8:28pm Mar 23rd 2011 via TweetDeck in reply to leohickman

sharonf

Sharon Fennell
@sharonf ...and all the others who joyfully ran with this story why they haven't corrected their stories at all

#8 [x] 8:32pm Mar 23rd 2011 via web in reply to sharonf

leohickman

Leo Hickman
@leohickman oh I will! disgraceful how this took off from nothing. Maybe should be flattered I was accorded so much influence over celeb ;)

#9 [x] 8:35pm Mar 23rd 2011 via TweetDeck in reply to leohickman

sharonf

Sharon Fennell
@sharonf As I think I said in comments beneath my blog, this ended up being more a media studies lesson than anything else. A lesson 4 all

#10 [x] 8:40pm Mar 23rd 2011 via web in reply to sharonf

leohickman

Leo Hickman
@leohickman exactly. The substance of such wild claims must be checked. Especially when it is said to come from a blog.

#11 [x] 8:42pm Mar 23rd 2011 via TweetDeck in reply to leohickman

sharonf

Sharon Fennell
@sharonf and now this... http://www.carbonbrief.org/blog/2011/03/johnny-ball-to-work-with-gwpf

#12 [x] 8:46pm Mar 23rd 2011 via web in reply to sharonf

leohickman

Leo Hickman
@leohickman the BBC just *love* their "balance" saw it all the time in autism/vaccine discussions. Ball speaks for

#13 [x] 8:50pm Mar 23rd 2011 via TweetDeck in reply to leohickman

sharonf

Sharon Fennell

@leohickman oops! They love having famous "sciencey" spokesperson to call on. Ball hs created new role for himself. martyr status helps role

#14 [x] 8:53pm Mar 23rd 2011 via TweetDeck in reply to leohickman

sharonf

Sharon Fennell

So Hickman admits that he just ran with it as he had "no reason to doubt" Ball, and that checking further- or "detective work"- can be left to his readers. Now really, how long would it take to read the blog Ball talked about, search it to find the post in question, and check that he hadn't been making it up as he went along.

In Hickman's 2nd Guardian article he wrote:

Personally, I don't really want to get drawn into the nitty-gritty of how Google works, the intentions of those who build porn sites, or whether certain blogs have been deleted or not. I asked Ball to respond on these points and he did so.

Why not? Hickman gave credence and lots of publicity to Ball's claims regarding these very issues. He is a respected Guardian journalist and author on environmental issues, and not some seedy hack bent on muck raking. His contribution to the propagation of these claims is substantial.

I do appreciate that he made a link available in his update article, and explained the nature of this personal blog- it's hardly capable of changing a celebrity's career. However I didn't notice an apology anywhere there for the initial oversight; just saying he took other's words in good faith and checking up is too taxing, sounds all wrong to me. The whole point of his 1st article was to condemn the claimed mistreatment of Ball. And Ball still was given a platform to repeat his lies about my blog, repeating his claim that the line "Johnny Ball should not be allowed near children" comes up on Google links and that the post was removed- all untrue.

Obscure Blogger Vilifies Johnny Ball? No, Actually

noreply@blogger.com (Sharon) — Tue, 22 Mar 2011 13:42:00 +0000

I thought I might get back into blogging some time but didn't know it would happen like this.
I wrote this small scale blog for a few years before taking a long break. In that time I deleted most of my sidebar, especially links to other blogs I am no longer regularly reading, leaving static links like a 3 year old blog awards badge and the link to sense about science's libel campaign. A working email address was still displayed on my Blogger profile, but I rarely checked it. All new comments go to my main email so I see those right away. Oh and I haven't checked my stats for at least a year- why bother?!

Recently I checked that little used email address and had a message alerting me to a Science Blogs post on Deltoid, a blog by Tim Lambert. This was the first notice I had that Johnny Ball was going around telling credulous journalists that a nasty blogger was mounting a campaign against him. In an interview with the TES he complains that:

his bookings have dropped by 90 per cent over the past year and the 72-year-old has blamed this on harassment by extreme environmentalists who object to his dismissal of climate change as “alarmist nonsense”.

He continued to complain about some blogger saying he “should not be allowed near children”. He then claimed:

This was clearly a criminal act aimed directly to damage me and my career business,” he said. “Since notifying the police of these acts aimed at damaging my name and reputation, the offensive web links have quite amazingly disappeared.

So who is this mysterious blogger who removed one of the "offensive" links after he complained to the police- it's all revealed on his own (horrible looking, badly formatted) blog. He writes [scroll down to the terrifying sounding headline: "VERY IMPORTANT ANNOUNCEMENT. Wednesday 9/2/2011"] My thoughts are in red:

It is with horror and disgust that I find that I am the victim of some kind of Internet Smear Campaign.Oh really? Tell us more.

I have had to complain to the police and my problem is now logged as a harrassment (sic) case and is being investigated. Wow, sounds serious. Someone better look out or the fuzz'll be onto their bad self.

This morning, an early phone call asked if the voice mail saying I could not attend a Teacher Training event on 1st March was true. Luckily the recipient knew that I make all my own telephone calls. We have the recording which we will hand to the police. The event was posted on my News and Apperances (sic) listing. How awful, Johnny is loosing bookings over all this! Just who could have so much power in the life of the famous man?

Anyone Googling “JOHNNYBALL” (without the gap) may have found a sponsored direct link to “Johnny Ball/Paul Raymond” which when clicked on immediately opens up on a collection of explicit nude pictures of females. I had obviously opened this link and contacted the Paul Raymond organisation. Before they could act, the link had been removed, - 9/2/11 - so it is clear that I am being monitored. Someone please explain the internet to Johnny- meta tags, other people in the world sharing his name- there are many non-conspiracy reasons why this could have happened.

Also on a Northern Ireland Blog, The Family Voyage, you tell 'em Johnny...wait a minute, that's me! WTF? which prides itself on winning some Blog Award (yay! big up my blog award...oh, he's being snarky, I'm hurt now) flagged JohnnyBall and featured the statement, “Johnny Ball should not be allowed near children.” This is a lie- neither the blog post nor the comments contained that statement. Being near to children has been my career for over 50 years. As yet I cannot contact them, as their site is only open to known members?? (Their flagged Johnny Ball link has now miraculously disappeared) It's easy to contact me. Also, the post has not and never had disappeared- no idea why he claims this.

Their beef is that I dared suggest in 2009 on NI Radio that Sammy Wilson as Energy Minister was right when he refused to air “Carbon Trust” TV commercials, one of which showed a very young child being told a story of a drowning world through climate change. Following complaints to the Advertising Authorities, these ads were found “guilty of exaggeration and alarmism over climate change” and were ordered to be dropped. So that would indicate that I was totally justified in condemning them?

Anyone who knows me and my career, must know that I have never done anything that in any way would harm a single child. Who has claimed that he would?

I defy anyone to find anything that I have done in my career that, were it publicly known, would harm my reputation.
[Here follows some of his funny wee notions on climate science.]
Everyone who knows me, will know just how sad I am that I have had to write this blog.

Hopefully it will be the last. I so enjoy working to kids and making them laugh, before I add material that should hopefully give them confidence in their own abailities (sic) and their future as adults. Whatever is wrong with our society I see nothing wrong with the vast majority of the kids I aim to inspire.

Johnny Ball - Wednesday 9/2/2011 - updated 14/2/11

Note the lack of links in this piece- perhaps he doesn't know how to hyperlink?

So far, so daft. But this sparked off a furor among mainstream journalists and climate change "skeptics" all outraged at the evil "climate change zealot" who defamed their Johnny.

The Telegraph: Johnny Ball 'abused by environmentalists' over climate change denial by Graeme Paton

In an interview, he told how websites had been set up in his name featuring pornographic images and a blogger wrote that he should “not be allowed near children”.

The Daily Mail: Climate zealots made my life hell for being a sceptic says Johnny Ball, who was victim of porn and blog smears by Kate Loveys

Yesterday he revealed he has become the victim of a vicious hate campaign by environmentalist ‘zealots’.Mr Ball – father of Radio Two DJ Zoe Ball – popularised maths and science for millions of youngsters in the 1970s and 1980s with his eccentric TV shows. More recently he has carved out a career giving talks in schools and at science festivals and teachers’ conferences.

This will make the right-on brigade hot and bothered But he says zealots are trying to sabotage his career because he has described climate change as ‘alarmist nonsense’.
He claims the internet has been used to try to discredit his opinions. Bloggers have run campaigns stating Mr Ball ‘should not be allowed near children’.

Notice that my one lowly blog has metamorphosised into a whole host of campaigning zealot bloggers out to get poor Johnny. Wow.

Via the Deltoid post, I hear of a bloke writing in something called the Herald Sun who got really hot and bothered about all this: “Pedophile!”, the warmists argued

"It’s that totalitarian mindset outing itself again. The savagery and intolerance are unmistakable giveaways."

Writing on the Guardian Environment Blog, Leo Hickman wrote: Let's join Johnny Ball in condemning extremists in the climate debate

Ball says he was forced to call the police last week after a website featuring a pornographic image was posted online bearing his name. In a separate incident, he says a blogger stated that "he should not be allowed near children". He says that both sites have since been taken down and South Thames police says it is investigating his complaints.

No links to the blog in question on any of these so readers can assess the claims for themselves. Nor does it look like any of these esteemed journalists spent the 2 minutes or so it would have taken them to find the post Ball referred to and realise he was spouting bollox! I am only grateful that my name was not mentioned on any of articles as the climate change deniers are a scary bunch and I wouldn't want to have to deal with their attacks.

You might think given all the references to the police taking action against the perpetrators of these dastardly crimes, they might have been in touch, but no. The PSNI have not bashed my door down in a quest for justice. My blog has sat there utterly unchanged, uncontested and mostly unread for ages.

If you want to read the post in question, it's this: Johnny Ball, what happened to you?

In the comments, one person wrote:

I just went on Johnny Ball's site to send him an email asking him not to damage himself in this way. I then read his blog and it's all come clear. He's a religious nut. Should of been clear before. That's why he tied scientists to eugenics. Something religious people do. Suggesting that science caused the holocaust. Heard it before, again and again from these people. Johnny is not a man who should go anywhere near children with his ideas. He is not a man of reason and evidence but a ranting old lunatic. Guess the reason he disappeared from our screens is a mystery no more. Sad.

Note the quote in red. It is very different from what Ball claims I wrote.

At least Leo Hickman posted an update when commentors on his initial article on the matter posted a bit more information; things that he should have investigated himself.

Johnny Ball denies 'climate zealots are ruining my career' claims

For example, one of Ball's central claims was that a blogger had stated that he "should not be allowed near children". The word "paedophile" was not used, but the implication was clear. But soon the original blog posting was isolated and it turned out that the full statement used – by a reader on a blog run by a woman with an autistic son – was that Ball, as a climate sceptic, "should [not] go anywhere near children with his ideas". A very different message. Speculation mounted in the comments beneath my article – and elsewhere – that Ball was wrongly maligning and blaming environmentalists with this pointedly edited sentence.

Well quite!

But in this article Hickman quotes a conversation he had with Ball, asking for clarification. Ball just isn't ready to let go of his rancour with me:

The other [link which was removed] appeared on a Northern Ireland blog that prided itself in winning a blog award. Sheesh Johnny, enough praise for my blog award already! It was years ago! Googled items usually have two lines of introductory text. This one said, 'Johnny Ball should not be allowed near children.' This appeared on the listing and was very alarming. More lies.
Their issue was in my support on BBC Radio Northern Ireland of Sammy Wilson as Energy Minister who had said he would not allow a Carbon Trust commercial which showed a child of around 5 being read a bedtime story in which the world was drowning. On that show, I lost my temper as two other NI MPs were banging on about who had the largest carbon footprint over the mileage they each did in a week.
After many complaints, the Advertising Standards Authority declared the ads alarmist, or whatever - the point is they did feel they might be damaging and worrying for children and they were withdrawn – so, whatever the beef was, my stance was in line with the authorities and so I was justified. But for whatever reason, for that blog to make such derogatory statements about me, was totally out of order. The two blogs disappeared a few days later. The most derogatory statement I made about him was to call him a silly old duffer- a comment I stand by. Also, once again- the post never has disappeared! Wow- boggles!

So there you go, my reintroduction to blogging- not with a charming anecdote about my beautiful son, but in order to defend myself against ridiculous and frankly defamatory statements about me which were (though thankfully without including my name) propagated by the mainstream media. These articles gave rise to over 1000 comments, many of which were directed against the evil blogger attacking dear sweet Johnny.
Frankly I'm amazed. And rather pissed off.

Blog Update

noreply@blogger.com (Sharon) — Mon, 11 Oct 2010 12:59:00 +0000

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.

Creationism in the Ulster Museum?

noreply@blogger.com (Sharon) — Wed, 26 May 2010 09:33:00 +0000

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.

Repost from the bus on Irish Blog Awards 2010

noreply@blogger.com (Sharon) — Sun, 28 Mar 2010 14:20:00 +0000

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.

Westward Ho

noreply@blogger.com (Sharon) — Fri, 26 Mar 2010 21:28:00 +0000

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

Grandad – Passive smoking is beneficial
Twentymajor – It is time to turn our back on the criminal catholic church ltd
Panti – No more Mr. Nice Gay
Fatmammycat – Twilight, the horror, the horror!
Stranded on Gaia – I heard there was a secret chord
Curlydena – I wasn’t ready
The Voyage – Just as he is

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

noreply@blogger.com (Sharon) — Fri, 26 Mar 2010 20:18:00 +0000

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.

It's not the reward

noreply@blogger.com (Sharon) — Mon, 22 Mar 2010 22:40:00 +0000

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.

Trying School

noreply@blogger.com (Sharon) — Sun, 21 Mar 2010 23:40:00 +0000

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

noreply@blogger.com (Sharon) — Sun, 21 Mar 2010 22:46:00 +0000

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.

Words, language, attitudes and actions

noreply@blogger.com (Sharon) — Wed, 03 Mar 2010 09:14:00 +0000

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.

FAIL!

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.

The Princess and the Frog

noreply@blogger.com (Sharon) — Sat, 27 Feb 2010 23:13:00 +0000

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.

Orlando Holiday: Part 1 The Flight

noreply@blogger.com (Sharon) — Thu, 25 Feb 2010 14:21:00 +0000

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.

We're NOT supporting Andrew Wakefield Facebook Group

noreply@blogger.com (Sharon) — Sat, 30 Jan 2010 13:17:00 +0000

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.

Andrew Wakefield Verdict- Guilty

noreply@blogger.com (Sharon) — Thu, 28 Jan 2010 16:39:00 +0000

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

noreply@blogger.com (Sharon) — Thu, 28 Jan 2010 11:05:00 +0000

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?!

Forest Tracks

noreply@blogger.com (Sharon) — Wed, 27 Jan 2010 19:32:00 +0000

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.

Dear passengers on EI121

noreply@blogger.com (Sharon) — Tue, 26 Jan 2010 10:38:00 +0000

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

noreply@blogger.com (Sharon) — Tue, 26 Jan 2010 09:30:00 +0000

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!)

Planning for Disney World with Autism: The Flight

noreply@blogger.com (Sharon) — Fri, 22 Jan 2010 18:39:00 +0000

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!