Life is stressful now more than ever. But something wonderful has been happening and my inability to blog lately means I have not focussed on it as I usually would. My boy Duncan is doing really well. He is happy, settled, more focussed, talks loads, understands speech more and can carry out more complex instructions. His reading ability continues to improve. He has played lots of computer games and uses YouTube instruction videos (which have occasionally increased his vocabulary in less than optimal ways) when he gets stuck since he knows I'm no help. He also gets his brother Thomas to help him out now and then. The two boys are getting along really well. They have so much fun together though obviously they wind each other up at times too!
Lady is growing up fast. She has a lot to deal with, more than many children her age and as usual, she's amazing. This is such a fraught time for her, as she figures out just who she is and what her values are. She's asserting her individuality and I have to keep supporting and when needed, safeguarding her. Roots then wings and all that!
As for me, I will try to work out what is right and then to find the strength to do it. Nobody said it was easy, but I didn't know that it could be this hard either.
21 Oct 2009
1 Oct 2009
Forge ahead
I've neglected to blog much over the past 2 months, and have been thinking about what I want to write here. I feel like I share too much sometimes, but also that there's much that I keep hidden. The past few months have been a time of personal reflection on what it is I need and want and how I can raise my children in an atmosphere of love and possibility. In recent years I have reconsidered many of my values and ideas about the world and with new insight, have discarded many assumptions and taken new notions on-board. This is the real voyage, it's scary and exciting but it will continue as long as live. I hope.
Photo owned by wili_hybrid (cc)
14 Sept 2009
Thomas reassured
"What is the most important thing in your life?" Thomas asked earnestly, a mode he often adopts.
I didn't have to think about that one. "My family, all of you."
"Well, the most important thing to me is to live with someone," said the child whom I know hates the idea of being alone. But then, who at 7 can contemplate solitude. "If you all died I would probably go and live with B. and S. [my brother and sister in law]. That is, if I can find their phone number."
"If something as awful and unlikely as that were to happen, then there are so many people who love you and they would come to you and help to care for you. Your Granda and Grandma and all your aunts and uncles would help you and make sure you were safe."
"Oh, OK," said he and we hugged.
I didn't have to think about that one. "My family, all of you."
"Well, the most important thing to me is to live with someone," said the child whom I know hates the idea of being alone. But then, who at 7 can contemplate solitude. "If you all died I would probably go and live with B. and S. [my brother and sister in law]. That is, if I can find their phone number."
"If something as awful and unlikely as that were to happen, then there are so many people who love you and they would come to you and help to care for you. Your Granda and Grandma and all your aunts and uncles would help you and make sure you were safe."
"Oh, OK," said he and we hugged.
9 Sept 2009
Flipping and cycling
We had a sporty weekend. Thomas and Lady had their jujitsu class after which Lady tried out to join the new competition squad set up by her cheerleading group. Thomas and I watched and she was great. Afterwards one of the coaches I didn't know asked if she'd like to join 2 other squad classes, in tumbling and acrobatics. Hell yeah! She is so keen on her gymnastics and has for ages been hoping that a time may come when she could join a squad. She is very happy and I am proud of her. She will be doing over 7 hours a week of gymnastics and would happily do twice that. Flipping ace!
Gordon got bike racks for the car so we can fit all 5 bikes on and head off to various cycle start points. After lunch we drove to Comber and rode the Greenway into Belfast. It was a beautiful day and there were plenty of other people using the path, causing me to repeat the instruction "keep left" many times, along with old favourites like "slow down Duncan!" and "be careful, don't bump into the people/dog/child" as needed. There are few spots where the cycle path crosses a road so I had to be aware and make sure the boy didn't just ride on out without looking. It went well though. We did have to divert off the path to buy drinks for thirsty children as I'd left our own bottles in the car. But we made it all the way to Belfast.
Our final destination was McD's in a shopping centre. Duncan made another diversion into an electronics shop where he'd previously spied a Sonic PC game. The child never forgets. I allowed him to buy it and then we had to get to the (ahem) restaurant. Gordon and Thomas had gone on ahead (loo emergency) and I couldn't see where to go. Thankfully the curly haired sat nav that is Duncan took the lead. There was a hairy moment when he rode in front of a car pulling out of the carpark, thankfully it was going very slowly but it made me scared for a while and I stuck even closer to him.
We all went in, ordered and ate. Duncan sat and had burger and chips, interspersed with mouth fulls of ice-cream. It was, to use behaviourist speak, very good sitting. Clearly getting him well tired out is the key to family dining in public. He got a bit fed up by the end and shouted a little about something or other, certainly nothing too unusual given the generally high screaming child background noise of our location, but two girls in the booth next to us seemed to find it, to use Thomas's favourite word, fascinating and stared constantly.
The journey back was even easier as there were fewer people on the path. Lady and Thomas were marvellous as always, just got on and had fun. Duncan and I were last back. He was very pleased with himself, telling me that he was the fastest, the strongest and the proudest boy on the bike path! It was all very nice, but my backend hurt!
Next day I was lackadaisically lolling around as is my right on a Sunday when I remembered Lady's acrobatics class. We dashed off in the car, as fast as possible when the car was laden with bikes, and drove to the gymnastics hall. Sadly silly me hadn't looked at the timetable properly and I was at the wrong place. Lady was nervous about the new class and stressed at being so late. We got to the right place and she didn't want to go in at first but thankfully she changed her mind and really enjoyed the more advanced class. I am delighted that she has such a strong interest in a sport and that her persistence and effort is paying off.
As I write, Thomas is practising the splits on my bed wearing his band new leotard and shorts combo and he looks so adorable. He had a haircut on Saturday, had to be done since he'd tried the DIY approach and now it's really short. It suits him though. His gymnastics class is on this afternoon, and after that, Lady's first tumbling class. I'm going to be doing even more mum-taxi jobs than before. It's a good job I don't have the school runs to cope with also or I'd have to move into the car full time.
Gordon got bike racks for the car so we can fit all 5 bikes on and head off to various cycle start points. After lunch we drove to Comber and rode the Greenway into Belfast. It was a beautiful day and there were plenty of other people using the path, causing me to repeat the instruction "keep left" many times, along with old favourites like "slow down Duncan!" and "be careful, don't bump into the people/dog/child" as needed. There are few spots where the cycle path crosses a road so I had to be aware and make sure the boy didn't just ride on out without looking. It went well though. We did have to divert off the path to buy drinks for thirsty children as I'd left our own bottles in the car. But we made it all the way to Belfast.
Our final destination was McD's in a shopping centre. Duncan made another diversion into an electronics shop where he'd previously spied a Sonic PC game. The child never forgets. I allowed him to buy it and then we had to get to the (ahem) restaurant. Gordon and Thomas had gone on ahead (loo emergency) and I couldn't see where to go. Thankfully the curly haired sat nav that is Duncan took the lead. There was a hairy moment when he rode in front of a car pulling out of the carpark, thankfully it was going very slowly but it made me scared for a while and I stuck even closer to him.
We all went in, ordered and ate. Duncan sat and had burger and chips, interspersed with mouth fulls of ice-cream. It was, to use behaviourist speak, very good sitting. Clearly getting him well tired out is the key to family dining in public. He got a bit fed up by the end and shouted a little about something or other, certainly nothing too unusual given the generally high screaming child background noise of our location, but two girls in the booth next to us seemed to find it, to use Thomas's favourite word, fascinating and stared constantly.
The journey back was even easier as there were fewer people on the path. Lady and Thomas were marvellous as always, just got on and had fun. Duncan and I were last back. He was very pleased with himself, telling me that he was the fastest, the strongest and the proudest boy on the bike path! It was all very nice, but my backend hurt!
Next day I was lackadaisically lolling around as is my right on a Sunday when I remembered Lady's acrobatics class. We dashed off in the car, as fast as possible when the car was laden with bikes, and drove to the gymnastics hall. Sadly silly me hadn't looked at the timetable properly and I was at the wrong place. Lady was nervous about the new class and stressed at being so late. We got to the right place and she didn't want to go in at first but thankfully she changed her mind and really enjoyed the more advanced class. I am delighted that she has such a strong interest in a sport and that her persistence and effort is paying off.
As I write, Thomas is practising the splits on my bed wearing his band new leotard and shorts combo and he looks so adorable. He had a haircut on Saturday, had to be done since he'd tried the DIY approach and now it's really short. It suits him though. His gymnastics class is on this afternoon, and after that, Lady's first tumbling class. I'm going to be doing even more mum-taxi jobs than before. It's a good job I don't have the school runs to cope with also or I'd have to move into the car full time.
1 Sept 2009
Summer Ends
The summer holidays have ended and for a few hours each day, my lot are just about the only children around not in school or nursery. We needed new wellies; walks through the forest and down to the beach tend to leave one's footwear rather mucky from September onwards. So we went to the shops and noticed for the first time in months how we stuck out, even more than usual.
But since so many of their friends are in school and not tearing up and down the streets on bikes, my children were content to settle to some reading, writing and 'rithmetic (or Mathematics, as Thomas says gravely) and that sort of thing. As usual though the best part of their learning comes through conversation, asking questions, playing their games, reading, watching TV and whatever takes their fancy at any particular time.
Duncan has discovered Mr Men so has started collecting the books, watching the films, playing games on the PC and making pictures. He's quite taken with Sonic the Hedgehog too, and he and Thomas take turns to play a PC demo game he downloaded. Duncan gets Thomas to help him with the trickier parts. Sometimes he gets distressed when it's not going well. He's been distressed a lot about something or other these past few months. It's been hard for him and I lost a bit of my coping mojo for a while there (hence the lack of blogdom). So he was sad, and I was grouchy, making him sad and screamy making me tired and head-achy and so on.
But I discovered a great cure for these feelings of stress and inadequacy on the internet; a 3 night holiday in Portugal. Actually my sister found it for us. In an astonishing coincidence, she needed a bit of respite from life's arrows just now too! We both went to stay in a posh hotel where we lazed in the shade from a hot sun by the pool/beach, swam a couple of times, dined well, drank a bit and strolled a little and I read 3.5 mostly lowbrow books. It was the laziest most relaxing holiday I have ever had and it was marvellous. On our last visit to the beach we thought it wise to get off our backsides and go parasailing. But there were no slots left for us, so we stupidly handed over money to have some youngsters pull us behind the boat as we sat side by side on an inflatable dingy thing. I was not 100% sure I wasn't going to die while out there, gripping the handles and bracing with my legs as I fought to stop myself from crashing into the sea as we bashed and bumped our way through the surf. It was nice enough when they slowed down and went straight but mostly, it was hellish. Afterwards our arms ached and shook and even now, there's pain in many parts as I recover from that self inflicted ordeal. At least, I forgot my troubles utterly while it was happening as I focused only on the path of sea in front of me.
I returned to my family, a bit sorer, more freckled, but relaxed and ready to work. They'd all had a lovely time without me. They'd been for long bike ride on one of the days and Gordon enjoyed spending more time with the children than usual.
I'll be happy to get back into our normal life groove and hope to do more blog reading and writing again.
But since so many of their friends are in school and not tearing up and down the streets on bikes, my children were content to settle to some reading, writing and 'rithmetic (or Mathematics, as Thomas says gravely) and that sort of thing. As usual though the best part of their learning comes through conversation, asking questions, playing their games, reading, watching TV and whatever takes their fancy at any particular time.
Duncan has discovered Mr Men so has started collecting the books, watching the films, playing games on the PC and making pictures. He's quite taken with Sonic the Hedgehog too, and he and Thomas take turns to play a PC demo game he downloaded. Duncan gets Thomas to help him with the trickier parts. Sometimes he gets distressed when it's not going well. He's been distressed a lot about something or other these past few months. It's been hard for him and I lost a bit of my coping mojo for a while there (hence the lack of blogdom). So he was sad, and I was grouchy, making him sad and screamy making me tired and head-achy and so on.
But I discovered a great cure for these feelings of stress and inadequacy on the internet; a 3 night holiday in Portugal. Actually my sister found it for us. In an astonishing coincidence, she needed a bit of respite from life's arrows just now too! We both went to stay in a posh hotel where we lazed in the shade from a hot sun by the pool/beach, swam a couple of times, dined well, drank a bit and strolled a little and I read 3.5 mostly lowbrow books. It was the laziest most relaxing holiday I have ever had and it was marvellous. On our last visit to the beach we thought it wise to get off our backsides and go parasailing. But there were no slots left for us, so we stupidly handed over money to have some youngsters pull us behind the boat as we sat side by side on an inflatable dingy thing. I was not 100% sure I wasn't going to die while out there, gripping the handles and bracing with my legs as I fought to stop myself from crashing into the sea as we bashed and bumped our way through the surf. It was nice enough when they slowed down and went straight but mostly, it was hellish. Afterwards our arms ached and shook and even now, there's pain in many parts as I recover from that self inflicted ordeal. At least, I forgot my troubles utterly while it was happening as I focused only on the path of sea in front of me.
I returned to my family, a bit sorer, more freckled, but relaxed and ready to work. They'd all had a lovely time without me. They'd been for long bike ride on one of the days and Gordon enjoyed spending more time with the children than usual.
I'll be happy to get back into our normal life groove and hope to do more blog reading and writing again.
30 Aug 2009
Thomas chooses life
I'm tucking Thomas in to bed and he says, "if it was a choice between you dying and me dying, I'd want to die because I love you more than I love myself."
(Really, I think it's his fear of living without me.)
I say that I hope neither of us has to die any time soon, but I'm a lot older and have had more time so given the choice, I'd want him to have a chance to grow up.
He says, "for Melanie and Ricky, I think it'd be hard."
I ask who they are. He says they're some of the children he's going to have. "When they're both about 11, it's be hard for me to, you know, choose one. It'd be hard for you too wouldn't it, if you had to choose between me and Lady and Duncan?"
I assure him that it would be impossibly difficult as I love them all.
Then we share the final hug of the night.
For more of the boy's insights, including why the USA is so special, see his newly launched blog which he's called, Mega World, "because the world is very big after all."
(Really, I think it's his fear of living without me.)
I say that I hope neither of us has to die any time soon, but I'm a lot older and have had more time so given the choice, I'd want him to have a chance to grow up.
He says, "for Melanie and Ricky, I think it'd be hard."
I ask who they are. He says they're some of the children he's going to have. "When they're both about 11, it's be hard for me to, you know, choose one. It'd be hard for you too wouldn't it, if you had to choose between me and Lady and Duncan?"
I assure him that it would be impossibly difficult as I love them all.
Then we share the final hug of the night.
For more of the boy's insights, including why the USA is so special, see his newly launched blog which he's called, Mega World, "because the world is very big after all."
18 Aug 2009
Lady's birthday
Lady with her Grandma and Pippi. 
My girl is growing up!A week has passed since Lady turned 11. I still don't understand how I can have so old a daughter! We celebrated with a party, friends, a clown boucy castle, copious quantities of junk food, party poppers and two home made cakes. Best of all, her BFF (best friend forever for those who don't speak Girl) and her sister came over from London for a few days with their mum. It's been 2 years since they last visited so we were very happy to have them over again. The girls had a few hours to reconnect, then the rest of the party people arrived. It turned out to be a grand day, fine weather, great company, lovely gifts (thanks all!) and a bunch of happy sweet children running about keeping themselves busy.
Some of us went for a walk to the beach that evening. The girls played on the beach taking a heck of a long time to leave when I was ready to go home. Eventually they appeared, muck to the eyeballs, having climbed about the rock pools and grass and fallen into what Lady dramatically called "a trench."
The following day, I drove Lady, her friends and their mum to Delamont Park, a favourite of ours. The children went on the miniature railway then did their thing in the adventure playground while we mums drank a warm, brown drink we'd been told was coffee. Then we walked about a bit, enjoyed the scenery, took photos by the lake then watched as the clouds lowered to eclipse the view and we went back to the car, damp and hungry.
Then off to Downpatrick where we had lunch in the St Patrick's Visitor centre. The girls ran about the garden for a while then browsed the shop but we didn't bother with the exhibits.
I'd never taken the ferry from Strangford to Portaferry so took a detour that way. Then, not altogether on purpose, I drove up the east side of the Ards Peninsula, where the nice views were sadly spoiled by a glut of flags in many of the villages. These places could be so much more welcoming to visitors like my friends, places we'd want to stop off in, if more of the residents could see themselves as outsiders might.
Our visitors had to go home the next morning. It had been just lovely to have them over. There have been secrets and gossip shared, promises made and some close and special friendships renewed.
10 Aug 2009
Awesome Autism Blogs
The questionnaire on autism blogs I wrote about earlier (and if you can, offer to complete one yourself) made me think about something I take entirely for granted in my life, the many and varied autism blogs I read.
I was asked to rate how helpful I have found such blogs as a source of information and support in raising an autistic child. I had to answer truthfully that the blogs I read have made a tremendous difference to my life and my knowledge of autism and how to best raise my son. I have never thanked all of you who write these blogs. You write fantastically well, thoughtful and thought provokingly. You explain, challenge, advise, illustrate, unearth, advocate and amuse. I have had many of my thought processes utterly revolutionised by your words. The changes didn't stop with my attitude to autism and disability, I began to think and learn more about all sorts of societal privileges and assumptions on the value of life. By following your work on promoting good standards of science and the ways in which quackery has become embedded in autism discourse, both in causation theories and in the treatments offered, I have thought more about evidence, ethics, and the scientific process than I did in 6 years of formal scientific education at universities.
The first autism blog I remember reading was Left Brain/Right Brain. It was started by Kevin Leitch and was an amazing resource. It still is, and now it has evolved to a group blog with several excellent writers offering up regular posts on autism research, the rise in dangerous autism quackery, the legal tussles and advocating for rights and accommodations. I soon came across Amanda Baggs awesome writings on Ballastexistenz and the sparkling wit and elegant prose of the much missed Autism Diva. She might not be writing these days, but her blog is still a fantastic resource to dig into. Obviously I can't discuss fantastic autism blogging without mentioning the women who share an enviable ability to dissect mountains of data and writings and do a great job of keeping in check the people who claim to know what they're talking about when they really demonstrably don't, autism researcher Michelle Dawson and super librarian and "mere mother ... and housewife" Kathleen Seidel.
I could go on for pages but will limit this to just a few more of the people who have made the biggest difference to my own life. Bev who blogs at Asperger Square 8 is someone I have praised many times for her pictures that say so much so clearly and simply, and who has recently added a few wonderful videos to her site. Kristina Chew has been blogging for years about her son and regularly offers her educated and insightful assessment the latest autism story in the media. She now blogs at change.org with Dora Raymaker.
Orac from Respectful Insolence often blogs about autism quackery, in particular the vaccine causation nonsense and the dangerous quack treatments sold to vulnerable parents by charlatans only interested in the profit margin. I think however, Orac would much prefer it if he never had to write another autism post ever again.
My new favourite blog is The Gonzolog which combines all the things that make blogs great; intelligence, passion, humour and well argued opinions.
Finally, 3 men writing blogs I love to read; Ed at The Standard Review, Mike Stanton's Action for Autism and Steve's One Dad's Opinion. Heck, all the autism blogs listed on my sidebar are bloody brilliant and I can't eulogise all of them.
I wrote on the questionnaire that one of my aims for my blog and that of my blogging friends who have autism and/or parent autistic people, is to confront the ignorance and misinformation that is so prevalent abut autism. This is discriminatory and unfair on people like my son so I hope to show that having a child with autism does not mean the end of a happy family life, and that he can learn and grow without any bogus therapy. I am also intent on challenging the spread of quackery that abounds in autism.
I said that blogging is useful publishing platform that anyone with an internet connection can access, so it's a great way of reading the thoughts of ordinary people around the world, and of connecting with professionals. Once you figure out who talks sense and who is full of hot air and worse, then it's a great way to connect.
However, I forgot to mention the toxic posts of the people who promote the quackery whole heartedly, the damage they do to individual children whose parents follow their advice and inflict the unproven treatments on them as well as the negative and skewed portrayal of autism they promote.
I was asked to rate how helpful I have found such blogs as a source of information and support in raising an autistic child. I had to answer truthfully that the blogs I read have made a tremendous difference to my life and my knowledge of autism and how to best raise my son. I have never thanked all of you who write these blogs. You write fantastically well, thoughtful and thought provokingly. You explain, challenge, advise, illustrate, unearth, advocate and amuse. I have had many of my thought processes utterly revolutionised by your words. The changes didn't stop with my attitude to autism and disability, I began to think and learn more about all sorts of societal privileges and assumptions on the value of life. By following your work on promoting good standards of science and the ways in which quackery has become embedded in autism discourse, both in causation theories and in the treatments offered, I have thought more about evidence, ethics, and the scientific process than I did in 6 years of formal scientific education at universities.
The first autism blog I remember reading was Left Brain/Right Brain. It was started by Kevin Leitch and was an amazing resource. It still is, and now it has evolved to a group blog with several excellent writers offering up regular posts on autism research, the rise in dangerous autism quackery, the legal tussles and advocating for rights and accommodations. I soon came across Amanda Baggs awesome writings on Ballastexistenz and the sparkling wit and elegant prose of the much missed Autism Diva. She might not be writing these days, but her blog is still a fantastic resource to dig into. Obviously I can't discuss fantastic autism blogging without mentioning the women who share an enviable ability to dissect mountains of data and writings and do a great job of keeping in check the people who claim to know what they're talking about when they really demonstrably don't, autism researcher Michelle Dawson and super librarian and "mere mother ... and housewife" Kathleen Seidel.
I could go on for pages but will limit this to just a few more of the people who have made the biggest difference to my own life. Bev who blogs at Asperger Square 8 is someone I have praised many times for her pictures that say so much so clearly and simply, and who has recently added a few wonderful videos to her site. Kristina Chew has been blogging for years about her son and regularly offers her educated and insightful assessment the latest autism story in the media. She now blogs at change.org with Dora Raymaker.
Orac from Respectful Insolence often blogs about autism quackery, in particular the vaccine causation nonsense and the dangerous quack treatments sold to vulnerable parents by charlatans only interested in the profit margin. I think however, Orac would much prefer it if he never had to write another autism post ever again.
My new favourite blog is The Gonzolog which combines all the things that make blogs great; intelligence, passion, humour and well argued opinions.
Finally, 3 men writing blogs I love to read; Ed at The Standard Review, Mike Stanton's Action for Autism and Steve's One Dad's Opinion. Heck, all the autism blogs listed on my sidebar are bloody brilliant and I can't eulogise all of them.
I wrote on the questionnaire that one of my aims for my blog and that of my blogging friends who have autism and/or parent autistic people, is to confront the ignorance and misinformation that is so prevalent abut autism. This is discriminatory and unfair on people like my son so I hope to show that having a child with autism does not mean the end of a happy family life, and that he can learn and grow without any bogus therapy. I am also intent on challenging the spread of quackery that abounds in autism.
I said that blogging is useful publishing platform that anyone with an internet connection can access, so it's a great way of reading the thoughts of ordinary people around the world, and of connecting with professionals. Once you figure out who talks sense and who is full of hot air and worse, then it's a great way to connect.
However, I forgot to mention the toxic posts of the people who promote the quackery whole heartedly, the damage they do to individual children whose parents follow their advice and inflict the unproven treatments on them as well as the negative and skewed portrayal of autism they promote.
6 Aug 2009
Loads of books, and a punch to the head
Duncan and I took his brother and sister to summer scheme. He asked to look in the charity shop and being in no hurry, I parked the car and off we went. Well talk about hitting pay dirt. Someone must have cleared their book shelves and dropped the boxes off very recently. There were a good few children's book spilling out so I asked if I could dig through the lot and the man working there, a good guy as I've learned from previous visits, said to work away. So we plonked ourselves on the floor and shifted through the boxes. Duncan made a little pile of those he was interested in and I made a huge pile of my own. Then ecstasy, we found 3 Thomas the Tank Buzz books, Duncan's absolute favourites. I hauled the booty to the pay desk and told the man I'd probably need to nip over to the ATM as I didn't think the £10 note in my purse would cover it. He asked me for a fiver. No way, I said, take a tenner for all those. Nah, said he, give me £5 and tell all your friends to come over and look through our stuff. So off you go to to your local Action Cancer shop. They are the best.
Here's what I bought:
Duncan was so grateful, telling the man "thank you very much" and on we went to the pet shop to buy a new run for the guinea pigs. We passed the indoor play centre and he asked to go in. Again, feeling very spontaneous, I consented. We were the first people there. For a while after it was just Duncan and a younger boy, then a large group of 6-10 year old boys arrived. I had to redirect Duncan from the area reserved for 1-3 year olds, as he liked the slide there best of all. He was a bit frightened of going up to the first level of the frame for children his age. But when the gang of children arrived he felt a bit braver and followed them up the ladder and had fun in that area. I stuck by him all the time, moving about to keep him in sight. When his play time was almost over, I witnessed him and another boy bump each other going up some steps. They each tried to pushed past the other a bit then I watched as the other boy raised his fist and punched Duncan hard on the forehead. I called out to him to quit, and asked Duncan to come to me. He was very upset. He fell into my arms, tears streaming. He shook and shouted and bit at my shoulders saying over and over he was sad, angry and a bad and horrible boy. I just held him and sympathised and agreed that he was angry and felt bad. We moved to the chairs and he had a drink of water and sat on my lap for a while crying. One of the staff checked he was OK, she'd seen the whole thing. One of the woman accompanying the group of boys, one of which was little master hit a lot, came over to say sorry too. A while later she brought the boy with her and he said sorry. Duncan just said sorry too. As we left the other staff member asked after Duncan. They had been very kind, oh yeah, they'd given me a free cup of tea earlier when I hadn't enough change to buy Duncan's bottle of water and my tea. In the end, Duncan had enjoyed himself prior to the incident and I think he will want to go back again some time.
And the guinea pigs love their new run, they're popping (and pooping) all around while Pippi looks on greedily/curiously.
Here's what I bought:
- 2 Mister Men books
- 3 Thomas the Tank Buzz books
- 2 children's videos
- Winnie the Pooh Ladybird book
- Alexandre Dumas- The Three Musketeers
- The Usborne Internet Linked Science Encyclopedia (beautiful colour hardback)
- James Joyce - 3 novel hardback
- Robert Graves- Greek Myths
- Anthony Burgess- A Clockwork Orange
- Teach Yourself Irish
- Marcel Proust -Remembrance of Things Past
- Anita Shreve- The Pilot's Wife
- Ian Rankin - A Question of Blood (I love me some Rebus.)
- Minette Walters- Fox Evil
- Kazuo Ishiguro- The Unconsoled
- The Oxford Library of English Poetry Vols II and III
- Francosi Mauriac - The Knot of Vampires
- Leo Tolstoy- Anna Karenina
- Sylvia Plath- The Bell Jar
Duncan was so grateful, telling the man "thank you very much" and on we went to the pet shop to buy a new run for the guinea pigs. We passed the indoor play centre and he asked to go in. Again, feeling very spontaneous, I consented. We were the first people there. For a while after it was just Duncan and a younger boy, then a large group of 6-10 year old boys arrived. I had to redirect Duncan from the area reserved for 1-3 year olds, as he liked the slide there best of all. He was a bit frightened of going up to the first level of the frame for children his age. But when the gang of children arrived he felt a bit braver and followed them up the ladder and had fun in that area. I stuck by him all the time, moving about to keep him in sight. When his play time was almost over, I witnessed him and another boy bump each other going up some steps. They each tried to pushed past the other a bit then I watched as the other boy raised his fist and punched Duncan hard on the forehead. I called out to him to quit, and asked Duncan to come to me. He was very upset. He fell into my arms, tears streaming. He shook and shouted and bit at my shoulders saying over and over he was sad, angry and a bad and horrible boy. I just held him and sympathised and agreed that he was angry and felt bad. We moved to the chairs and he had a drink of water and sat on my lap for a while crying. One of the staff checked he was OK, she'd seen the whole thing. One of the woman accompanying the group of boys, one of which was little master hit a lot, came over to say sorry too. A while later she brought the boy with her and he said sorry. Duncan just said sorry too. As we left the other staff member asked after Duncan. They had been very kind, oh yeah, they'd given me a free cup of tea earlier when I hadn't enough change to buy Duncan's bottle of water and my tea. In the end, Duncan had enjoyed himself prior to the incident and I think he will want to go back again some time.
And the guinea pigs love their new run, they're popping (and pooping) all around while Pippi looks on greedily/curiously.
4 Aug 2009
The Autism Gut Question
One of the most prevalent unsubstantiated claims about autism (after the "lack of empathy" myth) is the idea that autistic children have more gut problems than non-autistic children. This notion was fed by the now debunked 1998 article by Andrew Wakefield who claimed to have discovered a new disorder he called autistic enterocolitis, a condition not recognised by scientists.
I have read countless times, parental tales of woe about their autistic children's constipation. yeasty poos, diarrhoea, and all sorts of bowel problems. No doubt, many of these are real, but reporting is rather self selecting. Most parents whose autistic children have no gut issues don't make as much noise. Moreover, constipation etc is common in all children.
In the past week, 2 scientific studies have been published that cast doubt on the validity of the autism gut connection. These are ably discussed on LB/RB.
The first study compared the stool patterns of autistic children and non-autistic children and concluded,
I have read countless times, parental tales of woe about their autistic children's constipation. yeasty poos, diarrhoea, and all sorts of bowel problems. No doubt, many of these are real, but reporting is rather self selecting. Most parents whose autistic children have no gut issues don't make as much noise. Moreover, constipation etc is common in all children.
In the past week, 2 scientific studies have been published that cast doubt on the validity of the autism gut connection. These are ably discussed on LB/RB.
The first study compared the stool patterns of autistic children and non-autistic children and concluded,
"During the first 42 months of life, ASD children had a stool pattern that was very similar to that of other children, apart from a slight increase in stool frequency at 30 and 42 months. There were no symptoms to support the hypothesis that ASD children had enterocolitis."
The second study examined the incidence of gastrointestinal problems in autistic children. It concluded,
So, according to this, autistic children are only as likely as non-autistic children to have gut problems.
The doctor who led the second study, Dr Samar H. Ibrahim, a pediatric gastroenterologist at the Mayo Clinic, has also criticised the common wheat-free/dairy-free diets autistic children are placed on despite having had no appropriate diagnostic tests.
For some children, restrictive diets may help, but I agree with the doctors quoted above, get some real medical advice first.
"No significant associations were found between autism case status and overall incidence of gastrointestinal symptoms or any other gastrointestinal symptom category."and
"As constipation and feeding issues/food selectivity often have a behavioral etiology, data suggest that a neurobehavioral rather than a primary organic gastrointestinal etiology may account for the higher incidence of these gastrointestinal symptoms in children with autism."
So, according to this, autistic children are only as likely as non-autistic children to have gut problems.
The doctor who led the second study, Dr Samar H. Ibrahim, a pediatric gastroenterologist at the Mayo Clinic, has also criticised the common wheat-free/dairy-free diets autistic children are placed on despite having had no appropriate diagnostic tests.
"There is actually no trial that has proven so far that a gluten-free and casein-free diet improves autism. The diets are not easy to follow and can sometimes cause nutritional deficiencies."
She also made an astonishing, welcome yet sadly uncommon call for standards and ethics in autism.
"Patients with autism should be investigated the same way as normal patients when they have GI symptoms. And doctors should do a thorough investigation before labeling them with any GI disorder because the overall incidence of any GI disorder did not differ from that of the overall population."
Dr. Patricia Manning-Courtney (medical director of a Center for Autism Spectrum Disorder in Cincinnati) said,
"For me, this study lends support to the recommendation I make to a lot of families that there is no evidence to support restricted diets. They're dangerous and risky. You have to think long and hard before you, as a parent, make that choice."When Duncan was diagnosed, talk of the GF/CF diet was all the rage on the autism lists and websites I perused. Most of the UK sites referenced Paul Shattock, a pharmacist who over 17 years ago, claimed that opioid peptides were associated with autism. However he has never published his evidence for this idea. Other studies have disputed his findings, like this paper which shows no correlation between IAG and autism.
For some children, restrictive diets may help, but I agree with the doctors quoted above, get some real medical advice first.
31 Jul 2009
Scooting all the way
My Dad called around just after lunchtime. Lady and Thomas were at the leisure centre for summer scheme, so only myself and Duncan were at home. We decided to go for a walk after having a cup of tea, but there came an almighty shower of rain. Ach well, we thought, it's only rain. What do you expect in Ireland. I took a couple of raincoats for myself and Duncan, packed Pippi's poop pick up bags and off we went, 3 humans and a dog. Or rather, since Duncan was categorising his family members as either human or elf yesterday, one elf, two humans and a dog.
Where we were.
Despite the earlier rain, it was a beautiful, clear and sunny afternoon. Before long I was too hot to wear my raincoat so tied it and Duncan's about my waist. I should have taken a bag. I had intended to walk part of the way along the coast towards the next town and then turn home with Duncan while Dad carried on and got a train home. But Duncan was away ahead on his trusty (and rusty) scooter and had no intention of stopping. I had to jog a few times to reduce the gap between us and often was to heard roaring after him, "DUNCAN, STOP! WAIT!" no doubt to the delight of other walkers. I always announce our presence when we're out and about.
It's a fair way to the town, taking an hour of fast walking to get there. Once there I lost sight of the boy for a while as it became more crowded and there were many more options of places he could go to. I ran to catch up (phew) and it turned out he was still tootling along merrily on the coastal path right to the town centre. He had a target in sight- the shop that sells half price ERTL Thomas the Tank trains.
A well placed ice cream van impeded our progress for ten peaceful minutes. Then on to the shop which provided one pretty little Bluebell steam engine. They sell cuckoo clocks there too, except that instead of a bird, they each have a farm animal pop out. The staff recognise Duncan now and always set off the clocks for him to enjoy, which is kind.
Dad waited outside with Pippi, who as usual attracted lots of positive attention. While she barks lots at anyone arriving at out house for the first minutes they're here, she is always impeccably behaved when we go out. She sat and enjoyed the adulation and strokes.
Then on to the park to wait a while until summer scheme finished. We were diverted again for a while to watch a breaker machine tearing up the road in massive chunks. Then I took Duncan into the library to use their facilities, he left his scooter very neatly against the bike rack. Then he raced off again to "the green grove", a rose covered walkway. Dad and I sat on a bench and watched him race about. He went into the play park for a while. I hovered nearby as usual, the park was full of younger children and I needed to be sure he was careful enough. He got on the roundabout with a little girl and pushed it around slowly until she got off then he sped that mother round like it was going to drill into the earth's core. He went on a see saw with a boy whose mum said they were over for the week and live in San Francisco (where Gordon is right now, and loving it!). She remarked that playgrounds here are rather more dangerous hence more fun that in the USA.
By then we had to go to meet the others. Duncan was fading a bit, finally all that exercise was taking a toll. We reached the leisure centre and walked to the train station. I was told that I couldn't take Pippi on without a carrier. Nooo! I was knackered by then and didn't relish the idea of walking home. The inspector went to ask the train's guard if he'd allow a one-off exception and thanks be, he said yes, so long as Pips didn't go on the seats. No problem there, I just held her on my lap. I will buy some sort of light collapsible carrier for future use.
We said bye to Dad on the train as he carried on the his house. Home again at last, and time to get the dinner on.
Where we were.It's a fair way to the town, taking an hour of fast walking to get there. Once there I lost sight of the boy for a while as it became more crowded and there were many more options of places he could go to. I ran to catch up (phew) and it turned out he was still tootling along merrily on the coastal path right to the town centre. He had a target in sight- the shop that sells half price ERTL Thomas the Tank trains.
A well placed ice cream van impeded our progress for ten peaceful minutes. Then on to the shop which provided one pretty little Bluebell steam engine. They sell cuckoo clocks there too, except that instead of a bird, they each have a farm animal pop out. The staff recognise Duncan now and always set off the clocks for him to enjoy, which is kind.
Dad waited outside with Pippi, who as usual attracted lots of positive attention. While she barks lots at anyone arriving at out house for the first minutes they're here, she is always impeccably behaved when we go out. She sat and enjoyed the adulation and strokes.
Then on to the park to wait a while until summer scheme finished. We were diverted again for a while to watch a breaker machine tearing up the road in massive chunks. Then I took Duncan into the library to use their facilities, he left his scooter very neatly against the bike rack. Then he raced off again to "the green grove", a rose covered walkway. Dad and I sat on a bench and watched him race about. He went into the play park for a while. I hovered nearby as usual, the park was full of younger children and I needed to be sure he was careful enough. He got on the roundabout with a little girl and pushed it around slowly until she got off then he sped that mother round like it was going to drill into the earth's core. He went on a see saw with a boy whose mum said they were over for the week and live in San Francisco (where Gordon is right now, and loving it!). She remarked that playgrounds here are rather more dangerous hence more fun that in the USA.
By then we had to go to meet the others. Duncan was fading a bit, finally all that exercise was taking a toll. We reached the leisure centre and walked to the train station. I was told that I couldn't take Pippi on without a carrier. Nooo! I was knackered by then and didn't relish the idea of walking home. The inspector went to ask the train's guard if he'd allow a one-off exception and thanks be, he said yes, so long as Pips didn't go on the seats. No problem there, I just held her on my lap. I will buy some sort of light collapsible carrier for future use.
We said bye to Dad on the train as he carried on the his house. Home again at last, and time to get the dinner on.
29 Jul 2009
Simon Singh's chiropractic article: “Beware the spinal trap”
Many bloggers today are reprinting a slightly altered version of the article on chiropractic Simon Singh wrote for The Guardian. Unlike scientists who defend their claims by discussion in the scientific media, the British Chiropractic Association (BCA) used the method so beloved of practitioners of non evidence based medicine, and sued Simon Singh for libel. There's nothing the alties like so much as a spot of legal chill.
Like all forms of woo, chiropractic is said to cure/treat autism. Quentin Wilson says it cured his autistic son and he used to be on the telly talking about cars so he should know. His anecdote is used by this UK chiropractic clinic as some sort of evidence of effectiveness.
Chiropractic is one type of woo that has before now, seemed to avoid close inspection from the DCs of the world who excel in exposing pseudoscience, as it seemed more scientific, or at least, sciencey. But the decision of the BCA to apply legal muscle to silence reasonable critique has only drawn lots of people to focus attention on their practices and positions. They are not enjoying the scrutiny.
Simon Singh wrote a decent, informative article and it'd do no harm for more people to read it.
If you agree that the law has no place in scientific disputes, please add your name to the statement.
-----------------------------------------------------
Like all forms of woo, chiropractic is said to cure/treat autism. Quentin Wilson says it cured his autistic son and he used to be on the telly talking about cars so he should know. His anecdote is used by this UK chiropractic clinic as some sort of evidence of effectiveness.
Chiropractic is one type of woo that has before now, seemed to avoid close inspection from the DCs of the world who excel in exposing pseudoscience, as it seemed more scientific, or at least, sciencey. But the decision of the BCA to apply legal muscle to silence reasonable critique has only drawn lots of people to focus attention on their practices and positions. They are not enjoying the scrutiny.
Simon Singh wrote a decent, informative article and it'd do no harm for more people to read it.
If you agree that the law has no place in scientific disputes, please add your name to the statement.
-----------------------------------------------------
Beware the spinal trap
Some practitioners claim it is a cure-all, but the research suggests chiropractic therapy has mixed results - and can even be lethal, says Simon Singh.
You might be surprised to know that the founder of chiropractic therapy, Daniel David Palmer, wrote that '99% of all diseases are caused by displaced vertebrae'. In the 1860s, Palmer began to develop his theory that the spine was involved in almost every illness because the spinal cord connects the brain to the rest of the body. Therefore any misalignment could cause a problem in distant parts of the body.
In fact, Palmer's first chiropractic intervention supposedly cured a man who had been profoundly deaf for 17 years. His second treatment was equally strange, because he claimed that he treated a patient with heart trouble by correcting a displaced vertebra.
You might think that modern chiropractors restrict themselves to treating back problems, but in fact some still possess quite wacky ideas. The fundamentalists argue that they can cure anything, including helping treat children with colic, sleeping and feeding problems, frequent ear infections, asthma and prolonged crying - even though there is not a jot of evidence.
I can confidently label these assertions as utter nonsense because I have co-authored a book about alternative medicine with the world's first professor of complementary medicine, Edzard Ernst. He learned chiropractic techniques himself and used them as a doctor. This is when he began to see the need for some critical evaluation. Among other projects, he examined the evidence from 70 trials exploring the benefits of chiropractic therapy in conditions unrelated to the back. He found no evidence to suggest that chiropractors could treat any such conditions.
But what about chiropractic in the context of treating back problems? Manipulating the spine can cure some problems, but results are mixed. To be fair, conventional approaches, such as physiotherapy, also struggle to treat back problems with any consistency. Nevertheless, conventional therapy is still preferable because of the serious dangers associated with chiropractic.
In 2001, a systematic review of five studies revealed that roughly half of all chiropractic patients experience temporary adverse effects, such as pain, numbness, stiffness, dizziness and headaches. These are relatively minor effects, but the frequency is very high, and this has to be weighed against the limited benefit offered by chiropractors.
More worryingly, the hallmark technique of the chiropractor, known as high-velocity, low-amplitude thrust, carries much more significant risks. This involves pushing joints beyond their natural range of motion by applying a short, sharp force. Although this is a safe procedure for most patients, others can suffer dislocations and fractures.
Worse still, manipulation of the neck can damage the vertebral arteries, which supply blood to the brain. So-called vertebral dissection can ultimately cut off the blood supply, which in turn can lead to a stroke and even death. Because there is usually a delay between the vertebral dissection and the blockage of blood to the brain, the link between chiropractic and strokes went unnoticed for many years. Recently, however, it has been possible to identify cases where spinal manipulation has certainly been the cause of vertebral dissection.
Laurie Mathiason was a 20-year-old Canadian waitress who visited a chiropractor 21 times between 1997 and 1998 to relieve her low-back pain. On her penultimate visit she complained of stiffness in her neck. That evening she began dropping plates at the restaurant, so she returned to the chiropractor. As the chiropractor manipulated her neck, Mathiason began to cry, her eyes started to roll, she foamed at the mouth and her body began to convulse. She was rushed to hospital, slipped into a coma and died three days later. At the inquest, the coroner declared: 'Laurie died of a ruptured vertebral artery, which occurred in association with a chiropractic manipulation of the neck.'
This case is not unique. In Canada alone there have been several other women who have died after receiving chiropractic therapy, and Edzard Ernst has identified about 700 cases of serious complications among the medical literature. This should be a major concern for health officials, particularly as under-reporting will mean that the actual number of cases is much higher. If spinal manipulation were a drug with such serious adverse effects and so little demonstrable benefit, then it would almost certainly have been taken off the market.
Simon Singh is a science writer in London and the co-author, with Edzard Ernst, of Trick or Treatment? Alternative Medicine on Trial. This is an edited version of an article published in The Guardian for which Singh is being personally sued for libel by the British Chiropractic Association.
27 Jul 2009
Notes from the week
The first week of summer scheme was a great success. Thomas informed me that it was excellent and that he didn't even know he'd make some new best friends. He's especially keen on a boy whom he likes because he's kind, funny and thinks Thomas is funny too. I thought those particularly good qualities to look for in a friend. Lady told me that Thomas is hanging out with a few other boys his age who run around saying, "uh oh, spaghetti-o!" which is Thomas' new catch phrase. There are worse things he could have taught them! His other new thing is to describe everything, deadpan style as, "fascinating." I don't know where he gets these things.
Lady has joined a group of pals all into sporty stuff. She loved the swimming, badminton and gymnastics best. I'm happy that they're both enjoying it.
Duncan and I had 3 quiet days together. We did a few tasks in town, chilled out at home, cooked chicken, printed out more pages for his Thomas the Tank books and went for lovely walks in the forest with Pippi dog. We also went to see the paediatrician and unlike the last time (hellish) it all went so well. The paediatrician wanted to review his progress since starting the medication. However he only took it for a month to no discernible effect. I thought about increasing the dose, after discussing that option on the phone with his doctor, but instead decided to stop giving it to him. By then the weather was better and we've been outside a lot more which helps him burn off his pent up energy and like all of us, he's happier when it's nicer outside.
He found a Thomas the Tank book in the waiting room so spent his time in the doctor's office avidly looking through it, reading out little lines now and then. I was so much more aware than ever before of talking about him in front of him, and trying to save his potential embarrassment. He was listening carefully even though he appeared not to and told me "that's enough" when I told some anecdote or other.
We went to the funfair for a while on Saturday while Lady had her cheer leading class. I took Thomas on the waltzer. Sweet mother, never before have I experienced a ride so fast. It went on for ages, kept slowing down giving me a false sense of relief that it was finally over, only to speed up again. It was like some sort of metaphor for life. Thomas was shaking when we alighted, but got his nerve up enough to sit by Gordon on the bumper cars while I accompanied Duncan. He "helped" me steer and we'd a great laugh. It was the only ride he wanted to go on, he just watched the rest.
On Sunday morning Duncan asked me to take him and Pippi for a walk. He specifically requested that the rest of the family not come! We walked for a couple of miles in the forest park and out near the shop. I had no money with me and he was content to just walk past and not go in. It was really nice. He took his scooter and was a little way in front of me. He pushed the scooter up one especially steep and bumpy hill saying as he went, "this is very hard work. Will I ever see the top!" Then nearing the road he took Pippi's lead and I carried the scooter. She kept digging in her heels and looking back to see where I was which limited his ability and desire to race off.
Later, Gordon's mum came over to babysit while he and I went shopping for clothes he needed. He's off to San Fransisco on Wednesday for a week long conference so he's got to look sharp. I'm well used to being the only adult about. But perhaps some time soon I'll get to switch the roles, at least occasionally.
Lady has joined a group of pals all into sporty stuff. She loved the swimming, badminton and gymnastics best. I'm happy that they're both enjoying it.
Duncan and I had 3 quiet days together. We did a few tasks in town, chilled out at home, cooked chicken, printed out more pages for his Thomas the Tank books and went for lovely walks in the forest with Pippi dog. We also went to see the paediatrician and unlike the last time (hellish) it all went so well. The paediatrician wanted to review his progress since starting the medication. However he only took it for a month to no discernible effect. I thought about increasing the dose, after discussing that option on the phone with his doctor, but instead decided to stop giving it to him. By then the weather was better and we've been outside a lot more which helps him burn off his pent up energy and like all of us, he's happier when it's nicer outside.
He found a Thomas the Tank book in the waiting room so spent his time in the doctor's office avidly looking through it, reading out little lines now and then. I was so much more aware than ever before of talking about him in front of him, and trying to save his potential embarrassment. He was listening carefully even though he appeared not to and told me "that's enough" when I told some anecdote or other.
We went to the funfair for a while on Saturday while Lady had her cheer leading class. I took Thomas on the waltzer. Sweet mother, never before have I experienced a ride so fast. It went on for ages, kept slowing down giving me a false sense of relief that it was finally over, only to speed up again. It was like some sort of metaphor for life. Thomas was shaking when we alighted, but got his nerve up enough to sit by Gordon on the bumper cars while I accompanied Duncan. He "helped" me steer and we'd a great laugh. It was the only ride he wanted to go on, he just watched the rest.
On Sunday morning Duncan asked me to take him and Pippi for a walk. He specifically requested that the rest of the family not come! We walked for a couple of miles in the forest park and out near the shop. I had no money with me and he was content to just walk past and not go in. It was really nice. He took his scooter and was a little way in front of me. He pushed the scooter up one especially steep and bumpy hill saying as he went, "this is very hard work. Will I ever see the top!" Then nearing the road he took Pippi's lead and I carried the scooter. She kept digging in her heels and looking back to see where I was which limited his ability and desire to race off.
Later, Gordon's mum came over to babysit while he and I went shopping for clothes he needed. He's off to San Fransisco on Wednesday for a week long conference so he's got to look sharp. I'm well used to being the only adult about. But perhaps some time soon I'll get to switch the roles, at least occasionally.
23 Jul 2009
I'm a Mummy and I'll vent if I want to
I am so sick of this. There are some people who choose publicise their feeling of rage, hate and shock at having given birth to autistic children. On Gonzo's blog I read about one woman's horrible bile-filled blog post about her daughter. This child is 8 years old. Her mum describes her as "recovered from autism" whatever that means. But this girl still causes her mum so much pain because she just isn't how she's supposed to be (link broken deliberately). The mother complains that her daughter isn't into dolls and make up, but prefers to goof about, play computer games or ride a scooter. I mean, how dare the child resist the gender role assigned to her. If she doesn't start with the make up by 8 she'll never know how to apply liquid liner properly.
But mum has more to say. She is jealous of the parents whose children have cancer! She wanted to punch her cousin in the face for sympathising about another cousin's child going through surgery, because her troubles were bigger; "my [recovered] daughter's MIND, HEALTH and LIFE’S POTENTIAL were stolen and I’ve had to figure out how to pay for them and get them back on my own! Don’t fucking talk to me about surgery! Where was my basket of cookies and flowers, Sorry about the Autism, Get Well Soon? Oh yeah, didn’t get one."
It's not good enough. It can't be right to get off on vitriolic hate speech about your own child like that.
Then this morning at Cat in a Dog's World I read that that Mummy venting had struck again. In a New York Times blog, a woman with a son with Asperger's felt free to tell the world how rotten her life is because of the way her son behaves. She blames all of this on his autism. Does she think this venting will make her life better? Does she think her portrayal of what is titled "the unvarnished reality of autism" will increase understanding of autism and autistic people or will it, as I suspect, make the public ever more fearful of those with an atypical cognitive phenotype? Some of what she describes is society's reaction to her son. I face the scowls when I'm out with Duncan too but that's not his problem but that of the mean ninnies who judge him and me.
She even says, "my son has been doing much better lately" but still tells her tale of woe as if it's all still happening.
I cannot say that her son is not as hard to live with as she says, but there are lots of children who are not autistic who are bloody hard work too. Choosing to become a parent means you have to expect the unexpected. Autism, or any disability, doesn't necessarily have to bring pain and suffering to parents. Different people react in different ways to difficult situations. While I am stressed and upset at times by things I must deal with, some of them related to my son's autism and some not, I don't see my life as a litany of horror. I get over it and keep going as best I can.
What she describes is NOT the unvarnished reality of autism, it's just how she chooses to characterise it.
I also disagree with the implication, by "it's time to stop mincing words" that until now, no one was telling about how horrid autism really is. That's nonsense. There are newspaper articles nearly every week by parents and siblings venting about how terrible the autism is and how it's ruined their lives. We have children's charities depicting autism as a monster. Massive USA autism organisation Autism Speaks released a staged film a few years ago which was all about how haaard life is for women with autistic offspring. Quack cures are featured on health pages, along with pictures of grim faced parents describing that they just had to try the calcium stripping chelation drugs/chemical castration drugs/homoeopathy/shaman therapy/exorcism/chiropractic manipulation because life was too awful before. Loads of books have been published giving insight into the "real and raw" suffering of these parents. How the hell can any of these people claim that they need to speak out and share their pain as if it's not been told of hundreds of times in very public places before?
And aside from how this affects the perception of autism in society, how do you think all this gross negativity affects the people being described? What will my son feel when he's old enough to understand the depth of hate that exists towards people like him? Oh this is something I fear.
Sarah expressed carefully and with compassion, her feelings on the New York Times blog post. Her letter was published. It's wonderful.
But I feel like giving up when I read the comments on what she had to say. Over and over again people are disparaging autistic people in the harshest terms, accusing them of lacking empathy because they express hurt when someone writes about how they destroy normal people's lives.
I still feel shock at the hate filled garbage thrown at Sarah for daring to write. She is damned as not autistic enough to comment, as mentally ill, as complaining over nothing. It's a box ticking exercise in seeing how privileged groups diminish the voices of marginalised people.
Edited to add, Bev has a typically marvelous post up on all this and Sarah has responded to the commenters. I have yet to read it, but I look forward to her annihilation of their ill formed arguments.
But mum has more to say. She is jealous of the parents whose children have cancer! She wanted to punch her cousin in the face for sympathising about another cousin's child going through surgery, because her troubles were bigger; "my [recovered] daughter's MIND, HEALTH and LIFE’S POTENTIAL were stolen and I’ve had to figure out how to pay for them and get them back on my own! Don’t fucking talk to me about surgery! Where was my basket of cookies and flowers, Sorry about the Autism, Get Well Soon? Oh yeah, didn’t get one."It's not good enough. It can't be right to get off on vitriolic hate speech about your own child like that.
Then this morning at Cat in a Dog's World I read that that Mummy venting had struck again. In a New York Times blog, a woman with a son with Asperger's felt free to tell the world how rotten her life is because of the way her son behaves. She blames all of this on his autism. Does she think this venting will make her life better? Does she think her portrayal of what is titled "the unvarnished reality of autism" will increase understanding of autism and autistic people or will it, as I suspect, make the public ever more fearful of those with an atypical cognitive phenotype? Some of what she describes is society's reaction to her son. I face the scowls when I'm out with Duncan too but that's not his problem but that of the mean ninnies who judge him and me.
She even says, "my son has been doing much better lately" but still tells her tale of woe as if it's all still happening.
I cannot say that her son is not as hard to live with as she says, but there are lots of children who are not autistic who are bloody hard work too. Choosing to become a parent means you have to expect the unexpected. Autism, or any disability, doesn't necessarily have to bring pain and suffering to parents. Different people react in different ways to difficult situations. While I am stressed and upset at times by things I must deal with, some of them related to my son's autism and some not, I don't see my life as a litany of horror. I get over it and keep going as best I can.
What she describes is NOT the unvarnished reality of autism, it's just how she chooses to characterise it.
I also disagree with the implication, by "it's time to stop mincing words" that until now, no one was telling about how horrid autism really is. That's nonsense. There are newspaper articles nearly every week by parents and siblings venting about how terrible the autism is and how it's ruined their lives. We have children's charities depicting autism as a monster. Massive USA autism organisation Autism Speaks released a staged film a few years ago which was all about how haaard life is for women with autistic offspring. Quack cures are featured on health pages, along with pictures of grim faced parents describing that they just had to try the calcium stripping chelation drugs/chemical castration drugs/homoeopathy/shaman therapy/exorcism/chiropractic manipulation because life was too awful before. Loads of books have been published giving insight into the "real and raw" suffering of these parents. How the hell can any of these people claim that they need to speak out and share their pain as if it's not been told of hundreds of times in very public places before?
And aside from how this affects the perception of autism in society, how do you think all this gross negativity affects the people being described? What will my son feel when he's old enough to understand the depth of hate that exists towards people like him? Oh this is something I fear.
Sarah expressed carefully and with compassion, her feelings on the New York Times blog post. Her letter was published. It's wonderful.
But I feel like giving up when I read the comments on what she had to say. Over and over again people are disparaging autistic people in the harshest terms, accusing them of lacking empathy because they express hurt when someone writes about how they destroy normal people's lives.
I still feel shock at the hate filled garbage thrown at Sarah for daring to write. She is damned as not autistic enough to comment, as mentally ill, as complaining over nothing. It's a box ticking exercise in seeing how privileged groups diminish the voices of marginalised people.
Edited to add, Bev has a typically marvelous post up on all this and Sarah has responded to the commenters. I have yet to read it, but I look forward to her annihilation of their ill formed arguments.
21 Jul 2009
Do you know what it's like?
Lady and Thomas start summer scheme today. It lasts all day from 9 to 5. Thomas has never done anything like this before and was a little nervous but excited. I arrived a bit early to sign them in. There were quite a few families gathered, and since it was raining hard, everyone was milling around indoors instead of lining up outside. Duncan was, I think, overwhelmed by the crowd and started running around and shouted a bit. I scooped him up in my arms since I had to talk to a staff member. I asked if I could sign my children in quickly as their brother is autistic and finds the wait difficult. Duncan was kindly providing evidence of my statement. The staff member agreed and went to fetch a pen. When the staff sat to tick off names I sidled up to sort out Thomas and Lady. That done, I heard a woman behind me complain loudly that "some people are so rude" and something about "pushing children." I turned, with Duncan still in my arms and asked if she was talking about me. She said yes, and that I'd pushed past people. I explained that my child is autistic and I'd been given permission to sign my other children in quickly. She said, "well, but you pushed my daughter and didn't even say sorry." I really don't think I pushed anyone, but perhaps Duncan in my arms had brushed the child without my noticing. Anyway I apologised to the girl who was about Lady's age, and said I hadn't meant to push her. The mum moaned a bit more but I didn't hear what she said. I looked at her, exasperated and said, "Do you know what it's like?!" She said no, and I left to say bye to Thomas and Lady. They had been standing apart from me in silence the whole time. I am not sure if they were just letting me get on with sorting things out, or if they were a bit concerned by my or Duncan's stress, or if they were embarrassed at all. But they smiled and took their swim bags and packed lunches to the hall to join the fun.
Walking out to the car I though about the encounter and what I'd said. I know I needed to get that accommodation for Duncan and that others could see it as unfair. I suppose it's the same at theme parks etc. when I get a pass to allow him to go on attractions more quickly and some mutter about queue jumping. I was concerned that my response was less than optimal. My last statement could be read as rather "poor me" when what I meant was, do you know what it's like to have to deal with people like you, not, do you know what it's like to have such a tragic life!
Ach well. It's done with now. Duncan and I have plans. It's going to be quite nice for just the two of us to have time together.
Walking out to the car I though about the encounter and what I'd said. I know I needed to get that accommodation for Duncan and that others could see it as unfair. I suppose it's the same at theme parks etc. when I get a pass to allow him to go on attractions more quickly and some mutter about queue jumping. I was concerned that my response was less than optimal. My last statement could be read as rather "poor me" when what I meant was, do you know what it's like to have to deal with people like you, not, do you know what it's like to have such a tragic life!
Ach well. It's done with now. Duncan and I have plans. It's going to be quite nice for just the two of us to have time together.
20 Jul 2009
Child swap
My brother and I swapped offspring for the weekend. I drove a car load of children west to his place on Friday, leaving for home a few hours later without Thomas, who was staying with his favourite male cousin C. and with an extra girl, my 12 year old niece A.
A. is big into animals. There's nothing she likes better than to go hoking in the great outdoors for critters. Unsurprisingly Pippi was a big hit with her. The girls chatted until late, then awoke very early next morning. By 6am they were outside on the trampoline. I didn't mind, they're both big enough to get their own breakfast and I let them know I'd be getting a couple more hours of sleep myself.
They went for walks, and took the train into town unaccompanied. They visited the funfair and Lady returned with an outfit she's bought with the money I'd given them. She was starving though having chosen clothes over lunch. They walked to the beach and chatted and chatted.
Next morning I took them to see Harry Potter and the Half Blood Prince. We'd already seen it on the day of release but went again as A. was keen to see it too. I enjoyed it more 2nd time around as I wasn't so caught up in seeing how they'd translate the book, and enjoying it more on it's own merits as a film. The girls laughed a lot and A. was sobbing her little heart out at the end. Bless! Lady doesn't cry at films, she can't get too moved by what's not real. She doesn't take after her mum in that; I get all choked up for the silliest thing. Lady explained to me once that she doesn't get upset by scary scenes either as she just imagines all the film crew just outside the action. So much logic...
We dined at Ikea then they were off again, to the swimming pool. Their grandparents came over for a visit in the afternoon and we had a lovely few hours together. Duncan didn't want them to go home, "don't leave me!" he pleaded with his hands plaintively at his face. It was clearly something he'd seen on film!
Today my brother and his family all arrived here with Thomas. We had lunch and baby E. bum shuffled all over. She too was delighted with Pippi. She had a good ould poke and stroke at the dog, who was, after she got her traditional loud barking greeting out of the way, remarkably well behaved and tolerant. All the same, I watched her closely.
Thomas is just having a nice bath. He doesn't like to bathe in other people's houses. He had been a big hit with everyone, though they think he's really funny with his serious nature and forthright views. He ate everything he was given but announced that he preferred the food at home (in fact, he said he likes his Dad's cooking best. Humph.) On being asked in the shop if he wanted donuts, he said, "oh yes. They're my favourite type of junk food." It was an untypical response.
But he's so very like his dad, a little professor type. And I know how that can read. Perhaps he does have a few BAPs. I think we all do in this family. We're a happy, bappy lot.
A. is big into animals. There's nothing she likes better than to go hoking in the great outdoors for critters. Unsurprisingly Pippi was a big hit with her. The girls chatted until late, then awoke very early next morning. By 6am they were outside on the trampoline. I didn't mind, they're both big enough to get their own breakfast and I let them know I'd be getting a couple more hours of sleep myself.
They went for walks, and took the train into town unaccompanied. They visited the funfair and Lady returned with an outfit she's bought with the money I'd given them. She was starving though having chosen clothes over lunch. They walked to the beach and chatted and chatted.
Next morning I took them to see Harry Potter and the Half Blood Prince. We'd already seen it on the day of release but went again as A. was keen to see it too. I enjoyed it more 2nd time around as I wasn't so caught up in seeing how they'd translate the book, and enjoying it more on it's own merits as a film. The girls laughed a lot and A. was sobbing her little heart out at the end. Bless! Lady doesn't cry at films, she can't get too moved by what's not real. She doesn't take after her mum in that; I get all choked up for the silliest thing. Lady explained to me once that she doesn't get upset by scary scenes either as she just imagines all the film crew just outside the action. So much logic...
We dined at Ikea then they were off again, to the swimming pool. Their grandparents came over for a visit in the afternoon and we had a lovely few hours together. Duncan didn't want them to go home, "don't leave me!" he pleaded with his hands plaintively at his face. It was clearly something he'd seen on film!
Today my brother and his family all arrived here with Thomas. We had lunch and baby E. bum shuffled all over. She too was delighted with Pippi. She had a good ould poke and stroke at the dog, who was, after she got her traditional loud barking greeting out of the way, remarkably well behaved and tolerant. All the same, I watched her closely.
Thomas is just having a nice bath. He doesn't like to bathe in other people's houses. He had been a big hit with everyone, though they think he's really funny with his serious nature and forthright views. He ate everything he was given but announced that he preferred the food at home (in fact, he said he likes his Dad's cooking best. Humph.) On being asked in the shop if he wanted donuts, he said, "oh yes. They're my favourite type of junk food." It was an untypical response.
But he's so very like his dad, a little professor type. And I know how that can read. Perhaps he does have a few BAPs. I think we all do in this family. We're a happy, bappy lot.
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