Left Brain Right Brain

Last week, from Monday till Friday, Megan went on holiday with Naomi and her grandparents (Megan’s that is, Naomi’s parents). We were a bit apprehensive as we weren’t quite sure how she would accept the new environment or how Naomi, being 4 months pregnant, would cope without me to help her if Megan woke up in the night.

As it turns out, they had a fantastic time. Megan loves the water (showers at home last up to an hour and a half! Costs a bloody fortune!) and spent 4 hours (accompnied by a long-suffering Grandad) in the swimming pool. She only woke up one night they were away and she had no Vallergan the whole time they were there.

We really feel its done her some good. She’s more chatty and patient – obviously at ease with herself and us – and so I think this holiday will become a regular affair. Hopefuly next time (work and school meetings permitting) I can go too.

My current project (see previous posts for details of what the Project is about) is underway with a vengeance!

To that end I’ve implemented a rough timeline to the right-hand nav for this site. It shows the various stages, the date I plan to start/complete them and how many days are left until that particular deadline. I say ‘rough’ because I’ve no doubt things may get brought forward/pushed back depending on that thing called ‘life’ intruding occasionally.

I’m honoured and humbled to be listed in the ‘noteworthy’ section of the Vault. Its my second personal site design in a row to make it in and ranks proudly (to me) alongside my CSSBeauty lising for the previous incarnation of this site.

I only found out by checking Awstats and noticing a massive upsurge in visitors reported. I looked in the Referrers section and sure enough there I am.

So ‘thanks’ to Scrivs for the much appreciated listing. Its a bit scary to be listed alongside the sort of talent who regularly adorn the Vault but also very nice at the same time.

With an interesting programme and a very exciting list of speakers including Ian Lloyd of Accessify.com and Andy Budd the @Media 2005 event looks like its going to be great.

I won’t be going as the date is far too close for comfort to my wifes due date but everyone who is going has my undying envy! If you feel sorry for me, feel free to buy me a Mac Mini to in some way assuage my disappointment!

A piece in the Telegraph about a new pressure group – the Autism Liberation Front put me in mind with a recent discussion I had with a group of parents of autistic people recently.

This new pressure group is comprised of a group of (I assume) high functioning autistic people. Their motto?

I am not a puzzle, I am a person…..Here we’re silenced. Parents don’t speak for me.

There is an assumption most people make that autism is something akin to an illness i.e. that it is something that should be cureable at some point. This isn’t so. Autism is a condition or syndrome and as such there is no cure. Someone who is autistic will always be autistic.

This is one of the things that is most difficult to accept for parents whose kids have just been diagnosed as on the spectrum but accept it they must. Once you do accept it you become aware of the uniqueness of your child and appreciate the autism that makes them approach life in such a different way. If you cannot accept it then you are doomed to an unhappy life of ‘what ifs…’. As I said above, I recently had a debate with a group of parents who wished that there could be a cure for their childrens autism. They felt that because they had children who were NT (neurotypical) as well as autisitc that a cure would benefit their entire family. My take on it was that it would benefit everyone except their autistic child. How would you feel to be told tomorrow that society would no longer tolerate black people, or gay people or people with blue eyes, or people who were left-handed? What if you were told that there was a cure to make you white/straight/brown-eyed/right-handed? Would you take it because it would be ‘easier’? Of course you wouldn’t. Was Martin Luther King wrong to fight for justice? Emily Pankhurst? Ghandi? Would our lives be better if these people had decided it was too difficult? I even had one person in this debate say that it was right that society should be less accomadating as it would encourage ‘them’ to fit in. Thats the parent of an autistic child speaking.

The sad truth is that a lot of parents of autisitic people cannot see past their own desires for thier child. After all, no-one sets out to have an autistic child. However, these same parents are unable to come to terms with their childs disability. they can’t see that their disability is an integral part of what defines them. In the same way that I am right handed, they are autistic. It doesn’t define them but it is an undeniable part of who they are and to take that away from them is in my opinion simply wrong.

These same parents are also unable to appreciate the difference between cure and intervention. I think that interventions for some kids with autism are totally necessary. An intervention is something that intervenes into the situation without changing the fundemental aspect of who that person is. Megan for example, doesn’t speak and has speech therapy. This is an intervention. We intervene in her lack of ability to communicate. However, this speech therapy does not (cannot) alter the fact that she is autistic and always will be. She will always struggle to see the need for her to vocalise her wants but by giving ehr speech therapy she will be able to vocalise them (we hope) should she need/choose to.

The future for any parent is frightening. What will become of my child? Will they be happy? The future for the parent of a disabled child is terrifying sometimes. Megan may always require help and when Naomi and I die, who will be there for our little girl? Some residential care unit? Surely then I should wish for a cure with all my heart? No. the simple fact of the matter is that the choice is not mine to make. The only person who can make that choice is the autistic person themselves. Autism is such a fundemental part of autistic people that any other choice is tantamount to eugenics after the fact. Some kind of extreme-retro abortion if you like – “we didn’t like you being who you were so we decided to change you”. Well, not me. I love Megan and I genuinely love who she is. Would I have chosen to have an autistic daughter? No. Is our lives as parents harder than that of NT kids? Yes. Would I change Megan, change who she is? No way.

I hope that even those of you who usually come here for my design related postings can read this and appreciate how some disabilities are reinforced mainly by society. I hope you have a better understanding of autism. My own understanding has changed so much since keeping this blog and interacting with Megan after fully accepting who she is, autism and all.

The debate I allude to above ended badly. I was threatened with banning from the forum because I disagreed with the idea of a cure. I was told I was a bully for arguing my points. One parent said that Megans autism probably wasn’t that severe if I didn’t want a cure for it. How unfortunate that these parents are more willing to vent their frustration at their own children rather than at a society thats unwilling (as yet) to accomodate those who think differently.

Like their children Megan is diagnosed with severe autism. At age nearly 5, she doesn’t speak, sometimes forgets to use the toilet and still has nappies at night. She doesn’t sleep well and we sometimes have to drug her to get her to sleep if her non-sleep has gone on longer than our ability to stay awake (several days at a time mostly), she has to have 1-to-1 provision at her local school and we had to fight for months to get the LEA to give her a chance at all. She is terrified by certain sounds/smells/colours and only eats a very limited amount of food.

She also sings songs that to me, are the most beautiful things I’ve ever heard. She gives the best hugs ever. On the infrequent ocassions she says ‘Daddy’ it still makes me cry because from Megan every single word is precious. She is an expert at figuring out interfaces, loves Teletubbies, gets joy from such disparate things as the cat, Westlife, System of a Down, the covers of my Iain M Banks books, bouncing on anything that will bounce her, playing with her friends at school, being tickled – especially with my beard – under the arms, watching her huge DVD collection (ranges from Teletubbies to Wallace and Gromit to Finding Nemo). Every little victory seems bigger to us. Why would I want to ‘cure’ any of that?

Please read the cure section of neurodiversty.com for a greater understanding of why the word ‘cure’ angers so many autistic people.

The development platform where I work is .NET and as such I’ve started using it with a view to tying as much of our on and offline systems together as possible. For example, I’m working on an app at the moment that will submit an online mortgage application form straight into our customer management database. This would have untold benefits, mainly in terms of data security as the database is offline except for when the connection to the remote server is made and also it means our web server overhead is lessened as we have no need for an online database.

I can see the benefits of .NET and I think its a great idea – one language, one interface over many platforms and all that. However, as seems to increasingly be the case with Microsoft products, they’ve only done 75% of the work. The missing 25% is the same area they neglected with IE – rendering markup. .NET cannot, at the time of writing, produce valid XHTML. Here’s an example bit of code. Lets say I want a form:

How cool is that? No more specifying where and how – all thats done in the behind the scenes code (.NET does seperate functionality very very well it must be said). However, when that gets rendered to the browser it comes out as:

What the…? Try getting that to validate. Why do Microsoft do this? Its like they tempt you in with their brilliant premise (and .NET is functionally superb, lets be in no doubt about that) but then for a company that are supposed to be so pro-web they let you down with bad implemntation.

Now, there are workarounds for this particular scenario but, just like with IE – there shouldn’t have to be! I simply cannot for the life of me understand why Microsoft do this. Its like they purposefully go out to piss off those designers who care about their code. I understand that the 2005 version of Visual Studio will fix XHTML compliancy but surely it would be quicker and easier (and cheaper!) to just do it right the first time! Seriously, how hard can it be?