Dom ([info]bateleur) wrote,
@ 2008-03-21 19:02:00
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Current mood: thoughtful
Entry tags:events-ryan, rec-internet, topic-lj

Specialists Are Useful
Having found myself unable to work effectively today on either pooting or finishing my game prep I figured I might as well do an LJ update...

An Expert on Hippoes
To the West, a beach of perfect, white sand. To the North, a snowy mountain rose above the plains. To the East, wavy patterns and spirals on the ground hinted at rituals far beyond my understanding and to the South there was salt all over the XBox. The evidence all pointed to one thing: not content with tipping out a substantial fraction of our new table salt on the kitchen table earlier that day, Ryan had decided to finish the job in the lounge.

I told the story as concisely as I could, because there was still more to relate. And there were pictures to show. And there were questions about the past and about family and all sorts of other things. This was yesterday, when Dawn and I went to talk to Dr Tennant[1]. The appointment was supposed to take an hour and a half but actually lasted all morning. Dr Tennant is a specialist in diagnosing autism and related conditions. And when I say specialist, what I really mean is that's the main part of her job. Every day. She's good at what she does.

As it turns out she's also a really nice person, which may have contributed somewhat to the length of the interview.

But at the end we did get what we came for - a diagnosis. So, does Ryan really have an autistic spectrum disorder? Well... sort of. In fact his symptoms are a very strong match for childhood autism. This wasn't clear to us previously for a number of reasons (not least that various behaviours of Ryan's didn't seem to fit). But in fact in retrospect this says more about urban myths concerning autism than it does about either Ryan or our assessment of him. There were also some interesting indicators we missed entirely - apparently a fondness for walking about on tiptoe suggests autism, for example!

So what does this mean for the Hippo? Well, it removes all doubt as to whether he'll receive a statement. Clearly he will. It also means that the concept of keeping him in mainstream education with a one-to-one helper will have to be abandoned. He will need specialist tuition. This in turn will mean he'll need some kind of transport provision to get him to school and back (and might have to commute a fair distance). But counterbalancing these various inconveniences is a future for the Hippo. He can already talk (albeit not well). He has a high level of independence and is capable of self-care. He is good natured. All of these factors are strong positive indicators in terms of how his life will proceed from here.

The autistic spectrum is sometimes drawn as a line with profoundly autistic individuals at one end to normal people at the other. Dr Tennant explained that she has a different view of things. She drew a line with profoundly autistic people at one end. And at the other end people like mathematicians, scientists, statisticians and programmers. Somewhere along the line she drew an 'X' and explained "At a point along this line we feel a need for whatever reason to start classifying a condition as a disorder". Personally I could think of some pretty objective reasons for thinking of autism as a disorder, but already having encountered some of the debate on treatment of autism I understood what she was getting at. And yes, autism does have a strong genetic component.

Ryan's very fortunate to be living when and where he is. He will get the support he needs. And as he grows up he will have incredible tools at his disposal like computers and the internet to live a life as rich and interesting as anyone else's. Or, if we're being honest, more interesting. Because his ability to focus on what he's doing is far beyond anything I'll ever achieve.

It's not all happy, though. The main sad element being that he'll lose touch with all the friends he's made over the past two years. The way they treat him is remarkable - the exact opposite of the cruel, selfish stereotypes one might associate with children. They constantly provide him with help and love in every form, involve him in their games, ask me concerned questions about why he doesn't talk much. And he loves them back. When he's at home he will ask "Where's Lauren? Where's Cameron? Where's Elizabeth?" and we talk about how they're at home doing the same sorts of things as Ryan. I wonder if he'll still ask when he hasn't seen them in five years.



What Gerstmann Did Next
Remember Jeff Gerstmann getting fired from GameSpot for writing an honest review? Well... he's setting up his own review site. Although technically Giant Bomb hasn't launched yet it's already got a few reviews up. So far it looks like being a good resource. Maybe the first review site more useful than Metacritic? Time will tell.

A fairly amusing stream of other staff members have been leaving GameSpot. Now it's mostly just the rats left on the sinking ship. Interestingly, a lot of the good people who've left have allegedly signed up to write for... Giant Bomb. It's a small world.


Crossing the Central Reservation at 150mph
Ever wanted to drive from Lambeth to Ashford in under ten minutes? It might sound convenient, but it included some astonishingly illegal manoevres such as driving across Hyde Park and some highly impossible things like navigating the M25 by driving along the central reservation at a profoundly ridiculous speed[2]. You have to be careful as you pass junction 14 Southbound, because the central reservation suddenly gets wide enough that you can't drive through it anymore.

If you too want to try these stunts... Google Drive is for you. (Note: Doesn't work properly on Firefox/WinXP, you'll need to use IE. Not sure about other OSs.)

(Thanks to [info]the_elyan for the link!)

Mobile Stupidstick
Advantage of using a mobile phone for gaming: you were probably carrying it anyway[3]. Disadvantage: horrendous controls mean you can't actually play anything worth playing (except maybe Sudoku... which you could still play better with pen and paper).

What you need (like a fish needs a bicycle) is a mobile joystick. Combines the convenience of a separate mobile gaming device with the inadequate gaming experience you've come to expect from a mobile.

But wait, it gets better! Only works with games specially designed to support it!

EPIC FAIL!

LJ Storm-in-a-Teacup
Quite possibly none of my readers at all care about LJ's current storm in a teacup over the disappearance of basic accounts on LJ. But I still feel like commenting on the situation because in any debate it always irritates me when both sides completely omit a key point.

In this case: absence of basic accounts is effectively a massive change to the environment in which paid accounts exist. A big problem suffered by many online systems is the way that social networks themselves are non-portable. I like chatting to you lot online, but if other people I know choose to use different systems the two networks remain perpetually disjoint and communication is hampered. Previously it was always the case that if someone wasn't on LJ I could recommend that they get an account. Now that's not really possible, because either they have to pay money (almost certainly not worth it) or they have to endure a crazy level of highly intrusive adverts.

Combine this with the high level of must-lock-everything mindset amongst amateur bloggers and the result is that LJ's content has just become largely inaccessible.

Does that matter to me? Yes, potentially it matters a lot because all the value of LJ is in the interaction tools for me. Without other people using the system I might as well host this blog on my own site. It's not like I can't write HTML.

LJ was a commercial project from day one, they say. If that's the case, I can see why it was kept as quiet as possible, because the first hundred thousand members would probably have gone elsewhere had they considered the present situation likely.

Castle Crasher Map Drawing
Quite an interesting video is up on (the invariably slow) GameTrailers site showing map drawing for Castle Crashers. Basically an accelerated screen capture of their artist using Photoshop. Recommended if you make digital art yourself, if only so that you can feel smug about how much better your own workflow is. (Only joking, I like Dan Paladin's work.)



[1] Not David Tennant (who is Dr Who). Yes, I know it's confusing.
[2] Though what a reasonable speed might be for that feat I have no idea.
[3] Unless, like me, you don't have one.


(36 comments) - (Post a new comment)


[info]sosoclever
2008-03-21 07:24 pm UTC (link)
Hooray for the Hippo! And, honestly, if he wasn't autistic and moved to a different school, you'd be wondering if he'd still be asking after his friends in a year or two.

I really like Dr. Tennant's line. It sounds more realistic than the other one.

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[info]_kent
2008-03-21 07:26 pm UTC (link)
Unless, like me, you don't have one.

Or, like me, you only remember to pick it up if you roll a natural 20.

I quite like the look of that joystick, to the point of wishing there was some earthly use for it.

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Hoping Never to Offend
[info]marjory
2008-03-21 09:04 pm UTC (link)
I keep meaning to say that my brother is autistic. He's 32 this year and considered to be fairly high-functioning. Conceptual matters such as work, answering direct questions etc. are beyond him (sounds like an awful lot of people, right?) but he can make friends after his fashion and has been taught to read, write, do maths, pay for things in shops (oh the stories!) and prepare simple meals. He has hobbies, can express his preferences and vice versa in no uncertain terms,can keep himself happy by the hour, learns nwew things every day. He does this and has done this in a supported, specialist environment since the age of 6. He too went to the normal school for a couple of years and he had friends there who just understood he was a bit different. He had to go away to school and it was very strange for me as his big sister not having him around all of the time, but we got used to it and he came on in leaps and bounds when he was with people who understood his needs.

I'm hoping that none of this sounds like doom and gloom for you. Things have moved on, provision may well be different these days and in your part of the world and nobody ever really has precisely what they want for their loved ones anyway, I don't think. I know my parents mourned for a while once the diagnosis came in and my father never really stopped. But he is a happy young man, very much loved and loves us all in his own way. He's a joy even when he's being a sod.

It's taken me, big sis, years to get this through my head, so please don't think I'm airily dismissing anything you and yours may be feeling, but he has a good life and a happy one just... different. If you'd like another (grownup!) perspective, I can give you my Mum's number. It has been a rocky path at various times and we couldn't see this far ahead, but his case shows that happy, functional autistic adults can and do exist. And...

I couldn't just say *hugs* and then risk speaking out of turn.

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Re: Hoping Never to Offend
[info]lathany
2008-03-21 09:21 pm UTC (link)
Hearing this is very much appreciated (I'm Dawn btw, in case you don't know this).

Speaking personally, I found the whole thing a shock. I knew he had autistic aspects, but there's a hell of a difference between that and having it diagnosed by an expert as being full and actual autism. However I can appreciate that his life could well be a happy one - he's a very happy little boy - it's really getting my head around how different it'll be from the life I had/have (or thought he would have).

In terms of being a sister... Ryan has a twin sister who will be somewhat (but hopefully not in a bad way) affected by this. Do you have any advice on what you found helpful as a sibling to this?

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Re: Hoping Never to Offend
[info]marjory
2008-03-21 11:01 pm UTC (link)
It's really difficult to say, looking back. I suspect although I don't know your kids, that Bea will always just have known her brother was a bit different, but basically just Ryan. I couldn't recall Christian being any other way than he was. That's the point of siblings, right?

I'm not a twin, so perhaps the relationship was different. I can recall getting upset at school that my brother was going away, but that might not be the case here. I can recall getting annoyed at the extra attention paid to Christian when he came home, but maybe that was just rancourous, old me! I regret not having grown up closer to my brother but again if R is just going to a different school and they are at home together for the rest of the time, then that won't be an issue.

There was daft stuff, such as my hardly ever having friends over when he was home, not because I was ashamed or tired of explaining him, but due to the fact that my grandparents did a lot of us-wrangling (there are 3 of us) during school hoildays and I didn't want to be burdensome, so maybe that's a bugbear to watch out for. Little girls who don't have their friends over so often don't tend to get as many invitations themselves!

Definitely explain it all to her once you know what there is to explain as I can recall comprehending, after a fashion, an awful lot more than adults gave me credit for when I was that age.

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Re: Hoping Never to Offend
[info]lathany
2008-03-22 09:46 am UTC (link)
I think she'll be upset when he goes to a different school, although their current one is big enough that they're in separate classes. However, we'll keep up with the friends invites (which [info]bateleur usually sets up promptly) and birthday stuff. I think she's old enough already to grasp the general issue so we can explain. Besides, it's probably going to be easier explaining it to her than it was to my parents (who took it well, but I didn't enjoy the process).

Thanks.

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[info]bateleur
2008-03-21 09:24 pm UTC (link)
Very interesting to hear all that, thanks!

I'm hoping that none of this sounds like doom and gloom for you.

Not at all, particularly since you say:

But he is a happy young man, very much loved and loves us all in his own way.

Not much more anyone could wish for, is there?

In actuality is sounds to me as though your family had a harder time of things than we have over the diagnosis. After Ryan and Bea's tricky start in life (in fact probably you don't know the story) we were really just glad they both survived. We were all but told Bea would turn out to have cerebral palsy. It was uncertain whether or not she'd spend her life in a wheelchair. As it turns out, her main hobby is now dancing and the only symptom of her lung problems that still remains is a tendency to get a cough whenever she catches a cold. So when Ryan started having speech problems the potential for a very serious root cause was clearly there.

To say it turned out to be "just autism" sounds silly, but in a way that's how it feels.

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[info]marjory
2008-03-21 11:09 pm UTC (link)
Now you see I'm not a parent, so I have to try to empathise hard with people who are and likely get it wrong. But on average people want the best for their kids, right? And get anxious when they feel matters are out of their control.

The birth story is just awful. You've come through such an awful lot already. And I am the queen of platitudes!

My fond hope is that the world has moved on in this regard since 1983 and you'll all rapidly get the help and support you need.

As for 'just autism', well I had the same feeling after a long while about 'just MS' and knowing someone isn't going to die is beyond rubies.

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[info]bateleur
2008-03-22 08:08 am UTC (link)
My fond hope is that the world has moved on in this regard since 1983 and you'll all rapidly get the help and support you need.

Well... the "rapidly" part hasn't worked so far. But yes, that should improve a bit now. And if not, at least I have an LJ to rant on! ;-)

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[info]marjory
2008-03-22 02:57 pm UTC (link)
Nothing to the good everhappens rapidly enough! But pester power... now that's a force which can turn the world!

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[info]floralaetifica
2008-03-21 10:00 pm UTC (link)
Austism is such a peculiar thing, assuming we can actually call it a thing in the singular sense. Hopefully things have improved over the last 15 years, but when I was studying it at uni it really did seem that noone had a scoobydoobydoo what caused it, and half they time different researchers seemed to be talking about totally different conditions. Throw in the crossovers with things like OCD and Tourettes and you start to wonder whether we know anything at all. Given the fuzziness I can see where the people in the article you linked to are coming from, and for some forms of autism one man's disorder is another man's genius (or indigo child), but I'd still like to know what their evidence is for their assertion that all the people they named were autistic.

Anyway, it sounds like Dr Tennant is a very clever woman, and just as importantly a very helpful woman. It's great that Ryan, and by extension you guys, are going to get more help. Sad about his friends. Is there any way for him to stay in touch with them - after school activities or similar?

Out of curiosity, is he still musical? When I met him as a toddler I was convinced he was going to be the next Mozart (another one that people often claim might have been autistic. Or have Tourettes. Or be a Freemason. I don't *think* the last counts as a disorder.)

I'm slightly concerned for the lorry driver who appears to be asleep at the wheel. :)

disappearance of basic accounts on LJ

Oh, that is teh suxor. And foolish. Any social type site relies on having lots of members. Look at Second Life or Facebook - both crappy, but have an awful more members than their competitors, and so *continue* to have more, because there's no point joining any kind of social network if noone else is. Without free accounts you're never, ever going to get the volume of members you need to make it worth while joining, let alone handing over money for.

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[info]bateleur
2008-03-21 10:41 pm UTC (link)
Is there any way for him to stay in touch with them - after school activities or similar?

There sort of is. He has a twin sister. She gets on with several of his friends, which provides reason enough to invite them to future birthday parties and suchlike.

Hopefully things have improved over the last 15 years, but when I was studying it at uni it really did seem that noone had a scoobydoobydoo what caused it

In most senses they still don't (at least based on my very, very limited research so far). Can you pick up from your usual email address at the moment?

Out of curiosity, is he still musical?

He doesn't play any instruments or anything like that. But yes, he still loves music and sings in tune (though my own ear's quite bad so I wouldn't know how precisely in tune).

I'm slightly concerned for the lorry driver who appears to be asleep at the wheel.

It's not random. If the traffic light was green Ryan wouldn't have drawn him asleep.

Or be a Freemason.

Just as different languages have different words for the same thing, so it is with minds and concepts which are hard to express.

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[info]mrlloyd
2008-03-22 08:35 am UTC (link)
It's not random. If the traffic light was green Ryan wouldn't have drawn him asleep.

The boys a genius!

Andy Warhol may have been mildly autistic. You might want to ask him if those piles of salt mean anything.

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[info]lathany
2008-03-22 09:49 am UTC (link)
Hopefully things have improved over the last 15 years,

I think that they're getting better about figuring out what it is and what to do about it. Although, as [info]bateleur says, they're still speculating on the causes.

For example, Ryan and Bea were early prems. Being an early prem and being autistic is correlated. But the experts don't know which one causes the other, or even if both are caused by something else. The current theory is that being autistic means you're more likely to be prem (as for Down's syndrome), but it's a long way from proven.

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[info]floralaetifica
2008-03-21 11:35 pm UTC (link)
Can you pick up from your usual email address at the moment?

Yes indeedy.

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[info]dracunculus
2008-03-22 03:04 am UTC (link)
I just want to say I'm very impressed with your steady and loving parenting. Both Bea and Ryan sound like wonderful kids, and I'm sure your clear-eyed approach to the challenges ahead will stand them both in good stead.

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[info]bateleur
2008-03-22 08:09 am UTC (link)
Aww, thanks!

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[info]lathany
2008-03-22 09:49 am UTC (link)
:-) Ditto.

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[info]mrlloyd
2008-03-22 08:37 am UTC (link)
I have no idea what to say at this point. I guess I'll just support dracunculus' comment that I can't imagine either twin being in safer hands than they are with you both.

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[info]bateleur
2008-03-22 08:55 am UTC (link)
I'm sure there's a section in Routledge's Manual of Etiquette concerning how properly to respond to autism diagnoses.

But in the absence of a handy copy: Thanks!

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[info]lathany
2008-03-22 09:50 am UTC (link)
:-)

Thanks.

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[info]cuthbertcross
2008-03-22 09:46 pm UTC (link)
Thank you for posting, it's good to know that you guys have finally got to talk with someone who can make sense rather than give vague suggestions/rumours/thoughts.

I suppose labels and diagnoses do give a sense of certainty-within-uncertainty, but as you have noted, it's what you have that's important, rather than how it is classified. The Hippo is a lovely and most unusual beastie (he is so emotionally aware and considerate - I've met a fair few people on the autistic whotsit and never seen someone with his degree of genuine caring. Actually on those terms he beats a lot of so-called regular 6 year-olds)

There is a great deal of what-you-put-in-is-what-you-get-out with children, by that I mean a complement to you and [info]lathany. You have two fantastic, interesting children and that is so much a reflection of all the things you've done for them (and will no doubt continue to do).

I hope you are OK with my comments (if not please strike them off, OK?)

And as an aside, would you like to arrange a playdate sometime? [info]scarysaxon is now sitting up, and so is a willing victim to be laid upon a large Thomas Traintrack while multitudes of small plastic engines whirr around in circles..... [info]babysaxon would love to see the duo too!

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[info]bateleur
2008-03-23 12:28 pm UTC (link)
I hope you are OK with my comments

Of course - they're very welcome. :-)

And as an aside, would you like to arrange a playdate sometime?

Yes, definitely. It might have to be after Easter sometime. Also, I was chatting to Rachel on FaceBook and she was thinking maybe she and Zoe could come along too? Or if that's more people than you want in your house then maybe get together at some venue or other.

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[info]cuthbertcross
2008-03-23 07:11 pm UTC (link)
Ooh, that would be an excellent idea. I think it would be more laid back at our place (and Ryan has been here before, so less unfamiliar than an external venue).

Maybe if there are more of us there will be less room for Thomas track - hey, I've got some cowbells..... :o)

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[info]bateleur
2008-03-23 07:37 pm UTC (link)
I don't know about the kids, but I want to play with the cowbells!

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[info]verlaine
2008-03-24 04:24 pm UTC (link)
I've got a fever, and the only prescription is...

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[info]bateleur
2008-03-24 06:43 pm UTC (link)
...a quick websearch as a substitute for cultural knowledge!

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[info]dr_bob
2008-03-23 03:05 pm UTC (link)
When I was in Oxford, one of the other labs in the building worked on the genetics of autism. (Tony Monaco - Wellcome Trust Centre for Human Genetics if you want to check out more). It is regarded as a "complex" genetic disorder, meaning the genetic cause is a result of the combined small effects of many genes. However, (as it was spun in a talk I saw there) of all the complex genetic diseases it has about the highest genetic influence - around 60-90% concordance (both individuals affected) in identical twins, and much lower (0 - 10%) for non-identical twins/siblings (the large ranges in the % figures is a result of differences in definitions of autism). This is astonishingly high compared to other complex diseases (such as diabetes).

So given the bitty nature of the genetic causality, it's no wonder it's a spectrum! But equally, as I guess you've been told, environment plays an enormous role in the outcome. I know you're doing all you can to ensure that Ryan has all the best options.

You know where I am if there's anything I could help with.

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[info]bateleur
2008-03-23 03:47 pm UTC (link)
Hmm... that's interesting, thanks for that.

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[info]sumbitch
2008-03-23 06:10 pm UTC (link)
Hunh. That's not what I expected, either; I expected to hear "autism spectrum" or "Asperger's" or something like that, not a firm "autism". But I'm sure you're right -- that has more to do with the very limited mental description I have of autistic people as completely inward-turned and socially withdrawn.

Hemingway's famous definition of guts as grace under pressure certainly spring to mind here. You two got guts. Genetically speaking, that means that with two gutsy parents, Ryan and Bea will almost certainly also have guts (unless gutsiness is dominant and you both carry a recessive non-gutsy gene, but I think that's unlikely, given the state of our society). That will stand both of them in good stead where ever their journeys take them, outwardly or inwardly.

Lots of love to all of you.

(Reply to this)


[info]jiggery_pokery
2008-03-24 01:11 pm UTC (link)
Nothing original to say, though I send warm thoughts like everyone else, but I particularly like the way you put

Or, if we're being honest, more interesting. Because his ability to focus on what he's doing is far beyond anything I'll ever achieve

as a practical expression of what a silver lining might look like in this instance.

Google Drive: I enjoyed driving around the runways of Heathrow Airport, but they haven't put the Terminal 5 buildings in yet. (I've also seen an estimate of the achievable hypothetical speed as 360 mph...)

LJ: agreed, and again, very nicely put. Have a look at http://synecdochic.livejournal.com/205203.html though, all the same.

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[info]bateleur
2008-03-24 02:28 pm UTC (link)
Good link. Curious to know how they'd achieve this "complete interoperability" considering that would entail (for example) users of this new system being friendable on other systems and then having access to locked posts. Sounds great, but a bit unlikely.

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[info]onebyone
2008-03-27 04:36 pm UTC (link)
That's sort of what OpenID is supposed to be for...

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[info]bateleur
2008-03-27 05:29 pm UTC (link)
If the plan is OpenID then I'll stick with LJ for now until they've got everything working acceptably. (I've actually got an OpenID, but find it entirely useless.)

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[info]inskauldrak
2008-03-26 10:51 pm UTC (link)
'The Young Hippo' has the most important thing that anyone needs - a loving family and friends. That's not supposed to be flippant or a platitude. But when someone has that, and from the sound of it a good Dr to make sure you *all* get the support you need, then it's a big help.

I have some friends/family who have worked in this area of education so let me know if there's anything I can do to help

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[info]bateleur
2008-03-27 07:24 am UTC (link)
Thanks :-)

Good to see you're still online - your LJ's been pretty quiet of late. Everything OK?

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