23 May 2007

You Make Me Think

There's this meme doing the rounds, called The Thinking Blogger award. Mike Stanton was kind enough to tag this blog. It's quite an honour when you're linked to by a great writer and a thoughtful man like Mike.

The official rules for participation in the Thinking Blogger Awards meme are as follows:

1. If, and only if, you get tagged, write a post with links to 5 blogs that make you think,
2. Link to this post so that people can easily find the exact origin of the meme,
3. Optional: Proudly display the ‘Thinking Blogger Award’ with a link to the post that you wrote.

thinking blog

When I started blogging at the start of January 2006, I was simply intending to have a kind of online diary, that only a few friends and family would ever choose to read. The emphasis, I felt, would be on home-education. It transpired that I probably focus more on autism. I do mostly just record what we've been up to, but every so often, I get on my soap box and give out about the state of the world. My blog stats show that I'm certainly no big player, but a heck of a lot more people read this stuff than I ever expected.

In my favourite blogs, I would read something that inspired and affected me, challenging my assumptions and giving me better insight into the issues of autism, disability and home-education. It's hard to limit the selection to only 5, but made slightly easier if I do not tag those blogs I know have already been chosen for this award. As for these others, there's a chance they will have been tagged without my knowledge, but in that case they should revel in the admiration! So to get on with it, I choose;

Zilari, at Processing in Parts, even though she has decided to stop writing in this particular blog, and the Autistic Bitch From Hell (to give her her full title), at Whose Planet is it Anyway?
These women opened my eyes to the sh!t autistic people have to deal with, explain the rampant disablism, describe what can be done to improve things and every post produced by each is an absolute must read. Honestly, read them, AND the archives!

If Kathleen, from the Neurodiversity Weblog, has not already been chosen, I'm likely to be the next leader of the NI Assembly. But sure, I'll put her down anyway.
This woman is a ruby. She is clever, dogged, unfailingly polite, thorough, fair, compassionate, dedicated and whatever the highest award available to bloggers is, she should get one. She writes about autistic advocacy and anti-scientific theories of autism causation and 'treatment'.

My favorite home-education themed blog at the minute is by Dani and Allie, and is called Green House by the Sea. As well as writing lovingly about their really cool children and their path of autonomous learning, their contemplations on education and parenting are always thought provoking.

And Finally, I give you, Diary of a Goldfish, whom I've only been reading for a short time, since she arranged the terrific Blogging Against Disablism Day. But how can I put this scientifically...she rocks!

So there you go, 5 blogs, they make me think, and they're all written by women!

A few journeys

The travellers returned on Sunday morning. They'd had a fabulous time, meeting/catching up with family and enjoying all sorts of outings and activities in Toronto. They'd stayed at a guest house called The Toronto Town House which was perfect in every way and in a great location. Gordon's Mum was in raptures regarding the whole experience. I'm so happy they did it. As well as really enjoying a wonderful city, the week served to strengthen so many strands of family relationships.

The boys and I got on fine at home. We took a trip with my Dad, to visit my 2 brothers in counties Sligo and Leitrim. That kept us all busy for a day, and as always, it was great to see the brothers (or "brudders" as my nieces say!) and all the women folk.

The gymnastics class on Friday didn't work out for Duncan this time. He tried to copy the children for a while (he was singing 'Following the Leader' from Peter Pan). Then he started to try to interact with a few of the children while they were lined up copying the teacher. Basically he kept getting in the way of the children, and going the wrong way round the circuit etc. I told the teacher I wouldn't be taking him back. She said they hope to have a woman, who is more used to teaching gymnastics to disabled children, to work one-to-one with him sometime soon. If that happens he can try again, but for now, Thomas will go alone.

I did however, have a call a few weeks ago, from the school nurse at Duncan's old school. She was asking if I wanted to arrange a health check for him, which I declined since he's been to the paediatrician recently. I did ask her if she knew about any social groups for disabled children, particularly any that also involve siblings. She rang me back last week to tell me about a youth club and an art class that they all could attend. I will have to check these out.

18 May 2007

What is so great about ABA?

I've read in a few places lately about early autism diagnosis and the (debatable) importance of early intervention. There was an interesting discussion on the Autism Parents Forum here. Then there have been some thoughtful blog posts by various people including the always astute Abfh and one by Joey's Mom.

As well as that, I've been reading more and more in the Irish media and on Irish blogs, about the campaigning by an Irish ABA lobby group called Irish Autism Action (IAA) and the recent court action by the parents of a 6 yo autistic child, who wanted to force the state to pay for 30 hours/week of ABA therapy. They lost the case but the state has just been ordered to pay them €61,000 in costs, to cover the delay they faced in gaining a diagnosis, and because the boy was denied any services until he had a firm diagnosis. The story is reported in the Irish Independent. In the same paper, is an article about a grubby little ad by the aforementioned IAA, which was banned by the broadcasting agency.

The Irish general election next week, has seen all sorts of people, journalists and politicians in particular, talking about autism. The only game in town, as far as they seem to be concerned, is ABA for the children. Alternative educational methods are ignored, as are the needs of older autistics.

For us, as far as early detection and intervention are concerned, I suspected Duncan was autistic when he was about 18 months old. I looked up 'autism' in a paediatrics book, and it didn't describe Duncan at all, since the symptoms listed were things like 'total disregard of other people...highly resistant to being held by care-giver...'

When he was 2, I thought about autism again and this time I turned to the Internet. I came across CHAT and after a few short minutes, I knew for certain that he was autistic. Over the next few months, what I read convinced me that I had to go into action, get him loads of ABA and hound the education board to pay for it. Then after hours of therapy a week, when he was 4 and going to school, he be in a mainstream school. I did not want a child of mine going to one of those special schools. I got over that.

After a while I investigated ABA further, and attended a talk by a provider in London (LEAP). I was not impressed. I knew that ABA, at least how that organisation were offering it, was not for Duncan. For one thing, it was prohibitively expensive, and the likelihood of getting the education board to fund it was very low. But mainly, I knew that the way the programme was explained to me, it would have made Duncan very miserable. Also, the more I heard them focus on the Lovaas claim that the children could be made 'indistinguishable form their peers', the less I trusted them. They kept harping on about a study published in 1987. Was that really the best 'evidence of effectiveness' they could offer?

Instead I discovered an nursery for children with autism and related conditions, which Duncan attended for 4 mornings a week for over a year. They used aspects of TEACCH, the Hanen approach to promote communication, and some PECs . One of the 2 main teachers was an excellent speech therapist and she helped Duncan tremendously. The focus there was on learning and play, but mainly on helping the children to communicate.

The NAS EarlyBird parental training programme also helped me gain knowledge of how to help Duncan. And now he's learning at home full time, he's speaking perfectly well enough to let us know what he wants and needs, and to give orders now and then (as when he told me yesterday after we visited my brother and they were our car ready to go home; 'Mummy, get in the car, now!') He's learning to read, both by using the computer to find films and characters etc, and via phonics lessons with me. He's learnt how to draw beautifully (I think, though I'm biased!) on paper and using computer art programmes. Earlier he drew a Percy Engine on Microsoft Paint, not the easiest of programmes, but his choice recently. It was fantastic. I actually had some little tears of pride and surprise when I saw it, but even though I saved it, he cleared it and saved over the file.

So what I'm getting at, is there is no reason to think that it gets harder for anyone to learn as they get older. There is no 'window of opportunity' after which the child is damned. ABA is not necessary, though if it works for someone else, fine. I don't understand however why all these new-style ABA programmes that people talk about are still called ABA though. Is it just shorthand for 'eclectic mix of speech therapy, occupational therapy, play, child-led learning, with a hint of discrete trial training'?

12 May 2007

The Zoo, Gymnastics, and Toronto.

Last Saturday, I took the boys to meet up with 2 of my brothers and their families, at the zoo. It's the first time Duncan has been in over a year; our last visit to the zoo together was very difficult. This time I planned more carefully. I made a little book showing exactly what we'd be doing, went to the shop on the way to ensure I had enough drinks and snacks, and brought some money for the inevitable ice-cream van. Duncan decided that he wanted to go in his Major buggy, which was a heck of a lot easier for me than having to carry him on my back on the hilly zoo paths. We ended up having a lovely time with friends and relations, and everyone benefited from my big bag of snacks.

There was a nice group around for dinner after the zoo visit (M&S curry; very nice) and my youngest brother stayed overnight with his girlfriend and daughter. We don't get to see them anything like often enough since we all live so far apart. My sister phoned when they were all here and was jealous to be missing out. That's the problem with living in London. Hopefully she'll move back eventually, (ah go on C!)

The Belfast Marathon took place on Monday. My SIL was running the whole damn thing, her first ever marathon! What a woman. I went out early with Lady and Thomas, hoping to see her and her sisters and cheer them on a bit. But I missed them, they'd either ran past before I arrived or when I'd left. Unfortunately, Thomas was too cold to stay for any longer. At least I recognised one of the runners. The other spectators were just standing around silently when we got there. I started clapping (to Lady's embarrassment) and thankfully a few people joined me, so I didn't feel like such a plonker. But for god's sake, those runners deserved a bit more than stony-faced observation as they stomped the windy streets of Belfast for 26.2 miles!

On Friday, the boys had their 2nd gymnastics lesson. It's a class for 5 year olds, and I had agreed with the manager that Duncan could try it out, and that I'd stay with him. Thomas loves the class. He has been wonderful too, really putting every effort into whatever they're doing, and following all instructions and requests. It shows that he didn't need to go to nursery or school for a few years to be able to line up and take turns and follow a class. His little face was shining with excitement and joy at one stage, when they were dong some stretching exercises and the teacher was asking them to pretend their fingers were spiders running along the floor in front of them. He was showing off a bit on the trampoline too, but not too much. That's my boy!

Duncan was frightened when we went there at first and sat beside me looking around. Then he started to explore and soon he was running around the whole room. He mostly ran around doing his own thing, jumping and climbing and leaping into the foam pit. But a few times, and much more so during the 2nd class, he joined the other children and copied them, especially when they were doing a little circuit of activities. The teacher has just recently moved from the region of London we used to live in, and taught a class of autistic children there, so she's very open minded and flexible about Duncan. She agrees that he's better off getting familiar with the place and equipment at first, and we encourage him to join in as much as possible, rather than try to compel him to do so.

Anyway, both boys are enjoying the class. Lady quite likes it too, since she stays with Duncan to help him and look after him (though I have my eagle eye on him at all times too, and have to do a wee bit or redirection now and then). Lady also has had permission to have a go on the trampoline when the class are finished with it!

Today, I'm busy helping Lady and Gordon prepare for their week long holiday in Toronto. Gordon's Mum is also going. This trip is our 80th birthday present to her! They will be meeting up with Gordon's cousin who lives there, and Lady is especially excited about meeting his daughter, who is exactly her age and whom she hasn't met before. We've been reading about all the various things to do and see in Toronto. It looks like a great city and they are all guaranteed to have a marvellous time. I'll miss them, but knowing they are all enjoying themselves so much, and that Lady and Gordon will have a good chance for some father-daughter time together, means I'm not going to be jealous.

Well not too much!

2 May 2007

Fantastic at Phonics

We easing back into normal days again...well, normal for us anyway! The boys are watching 'Come Outside' on Cbeebies. They both love this show. Lady is writing a letter (long overdue) to her best friend in London, and I've just spent some time with both boys in turn, doing a little phonics practice. I'd printed out the 'disks' from this free phonics resource years ago when Lady was learning to read. Duncan has not sat down to do phonics before, but he got the hang of it right away, and just flew through the words! He did 7 pages, before I saw he was getting a bit bored. He was able to decipher all the words, though I had to listen hard as he insisted on whispering them. I was very impressed. Then I repeated the exercise with Thomas. He only did 3 pages, he was much less interested! Anyway, I'm not too worried. We will just do a few minutes each day, and avoid potential tantrums, from all 3 of us!

Lady goes to Brownies tonight and I go to salsa class. I arranged today to take Thomas to a gymnastics and trampolining class on Friday afternoon. I'm going to let Duncan try the class out too, even though it's for 5 year olds. It might be better for him to do something with younger children. The woman I spoke to sounded supportive, so we'll just have to see how it goes.

The other thing is, Duncan has decided that he now wants to go to Disneyland Paris! We went out to a nearby playground on Sunday evening, and he was convinced we were all going on the aeroplane! Oh boy, just a few weeks too late! Anyway, we were only in the park 10 minutes when a pair of men came to close and lock it up. They were so grumpy, giving the children real cross looks- Duncan in particular! Duncan was protesting, he didn't want to leave when we'd just arrived, but I wasn't aware it closed as early as 7pm! These fellas were like characters from the Beano!

Anyway, I reckon I will just have to go back to Disneyland with Duncan, leaving the other 2 with Gordon. I've already told my sister that she has to come with us ;-)

1 May 2007

Blogging Against Disablism

Blogging Against Disablism Day, May 1st 2007

Today, is Blogging Against Disablism Day, hosted by Diary of Goldfish, in which lots of people;

write about disability and rail against the discrimination that disabled people continue to face...from discrimination in education and employment, through health care, parenting, family life and relationships, as well as the interaction of disablism with other forms of prejudice.

Like most people, disability issues didn't concern me much before my own disabled son was born. I was aware of the social model versus medical model issue and of the ways language can be used, ie 'wheelchair user' versus 'wheelchair bound' (NO!) but I did still consider people with disabilities to be somehow 'other' to me. And now, I'm not disabled, my child is. But I realise more than ever, that my own situation could change at any time, if I was to become sick or have an accident, or as I age. Disability issues do or will affect most of us.

My son is autistic. It's an integral part of him, like his gender, eye colour, racial background, etc. It affects how he learns, how he experiences the world and how he interacts with others. It is no less valid a way of being than a non-autistic life. He is a wonderful boy, just as he is. I want him and his siblings, to develop and grow to adults with the desire to learn and the ambition to realise their potential. I want them to have empathy and respect for others, to have confidence and self-esteem. I want them to develop a health conscious life style, the skills to solve problems and the flexibility to deal with modern life as well as they are capable. These goals are in the educational philosophy I have written for each of my children. And although I have the same wishes for all, they will not end up doing or achieving the same things and they will have different levels of independence. That's fine too. All we, their parents can do, is raise them the best we can, in an atmosphere of love and acceptance of their differences, difficulties and strengths.

Discrimination on the grounds on disability is no more acceptable than discrimination due to race or gender. It's endemic in our society, and there are many great voices out there challenging this, working to reduce disablism. I see disablism in the language used about autism in the media, the 'devastation rhetoric', the desire you hear expressed to rid the world of autism. Autistic people have a right to exist and have a right to be treated well by society, as do all disabled people.