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!