A life lesson ...

In the last week A-One's WOW guild kicked him out.

He was very upset telling me about it.

A-One: They said I made them feel uncomfortable.  That I talked too much about what I was doing.  And now they've put me on 'Ignore'.

Mum: Are they the same ones who were planning the real life event next February? (which A-One's father and I had been very nervous about, with all the risks of meeting up with online 'friends').

A-One: Yes, and I was looking forward to that.

Mum: Did they mean you talked too much about what you were doing in the game or in real life?

A-One: I think they meant the game.  What should I do?  I want them to reconsider and give me another chance.

Mum: Well, it seems like they don't want to.  You'll probably have to move on to another guild, and remember to not talk as much about what you're doing.

A-One: They told me a bit about that a while ago, and I thought I'd stopped doing that.

Mum: OK. Well, it seems like it wasn't enough for them.  All that means is that you need to improve picking up on social signals from people.  And you can do that.  But it's much harder in an online game because you miss out on all the non-verbal communication.  Do you know what that is?

A-One: No.

Mum: The words that people use are just a very small part of communicating.  Their eyes, tone of voice, posture - all these things tell you something too - in fact much more than their words.  For example, you might be talking to someone and their eyes might be looking away all the time.  That's a signal for you to stop talking, and perhaps ask them a question about themselves, or to let them talk about something.

A-One: Hold on.  Back track.  What were you just saying?

I repeated it, trying to couch it as a social 'rule' for A-One to learn, when he said:

A-One: I got a message from (a school friend) about that the other day.

He proceeded to show me his Facebook message.  A female friend had given him some tips on how to have (and not have) social conversations.  'Stand about one or two metres (sic) away from people.' 'I might say ...  Then you might say ....  Then I might say ....' and so on. 'You just don't keep talking about the same thing all the time'.  The tone of her message was genuinely wanting to help him, and I was touched by her kindness in going to the trouble of giving such direct feedback in as friendly a way as she could.

Mum: She's trying to help you A-One.  It might hurt to hear it, but you really can learn to do this better. We could practise it here.  She's been a good friend to you, trying to help you like this.

A-One: Do you know the worst part of the guild was that they had a meeting about me, and wouldn't let me be there. What can I do to make them take me back?

Mum: I don't know them, so I can't really advise on what approach might work, or even whether they'd be interested in hearing from you. 

A-One showed me the messages on the game, and they had clearly reached the end of their patience with him, yet had tried to be not too nasty in telling him.

Mum: Had you ever mentioned anything to them about a disability?

A-One: Well, yes, I had mentioned that a little.  And one of the members has a child with a speech problem, so I thought they understood.  It takes a while to find a good guild, and the people in this one seemed to be family oriented.

Mum:  Well, I really don't know if it's wise to try to talk to them again.  When a break-down in a relationship has got this far, if you really want to repair it, the very first thing you have to do is acknowledge what they are saying.  You certainly can't ask for anything first up.  And you might have to wait a while before you even say anything ... to give them time to get over the heat of it first.  Because it sure sounds like you've done your dash with them.

A-One: So what could I say?

Mum: Well, if you say anything at all, it has to be short, and simple, and gracious.

Despite my reservations about trying to repair a relationship with a group whom he has never met in real life!, because it's the first time he's really wanted some advice, I thought it presented a learning opportunity which he could apply in real life.

In the end, we spent a couple of hours talking through it.  We worked on some words which he wrote down on his iPod to copy it online later.  He later sent the message, 'I hear what you are saying.  I get it - I have to stop talking about what I do all the time (in game and IRL).  As you know I have a developmental disability and I want to improve myself.  Thank you for your feedback and for the good times I had in the guild.'

A-One: Of course, I think they really should give me a second chance! The worst part is that I won't even know if they got the message.

Mum: Well, if you don't hear anything back, you'll just have to move on, and remember how you can do things differently in future.  This is a really good time to add other groups to your life - in real life.  Join up for Tae Kwon Do or Karate, or is there some other sport you'd like to do?

A-One: Yes, I might like to do that.

He didn't hear back.

Testing

A-One and I have finally completed his practice and baseline tests using CogStateTM.  For him to have had sufficient sleep it usually means he's free in the afternoons, but I'm not always free then.  In my attempts to co-ordinate our schedules I'd occasionally hear faint mumblings of ... 'not important' ... but, in the end, he submitted relatively graciously.

To administer the tests I was required to read the instructions while they were also presented to him on the screen.  For the practice tests, he usually read ahead and pressed on without waiting for me to finish the instructions.  Except the working memory tests - he read and re-read them before proceeding.

For the baseline tests, because they are timed and should be done without significant breaks, I asked him if he needed a glass of water or to use the toilet before we started.  He decided he did.

An hour later (sigh) we got started.

Again I read the preparatory instructions, reminding him that the tests were the same as the practice tests, just different in the specifics so that they are still 'fresh'.

Mum: Are you ready to start?

A-One: Not yet.  I'll let you know.

A minute or so passed.

Mum: Are you ready yet?

A-One: No.  I'll let you know when I am.

A minute or so passed.

Mum: How about now?

A-One: No. Not yet.

Mum: Are you composing yourself, getting your mind ready for this?

A-One: Yes.

The first baseline test was to remember a shopping list.  As I started to read out the items, he burst out, 'Aren't these meant to be the same words as before?'  So we used up some seconds as I explained that the test is the same, but the words are different.  That's what the 'composing' time had been about - trying to remember the words from the practice test!

For most of the tests again, he pressed on without waiting for me to finish reading the instructions, except for the more challenging of the working memory tests.  We completed all the tests in about an hour and fifteen minutes. My observation, supported by the test results, showed that his working memory is quite good. When tests required that he 'work out' a rule or find a path in a maze, he performed better than when he had to remember many things short term.  But for anything that had made it into his memory, his delayed recall was then good.  This is consistent with our experience of him - it might take a while for something to get into his brain, but once it's there, it's there forever!  So it sounds to me like he would benefit from practising learning things off by heart - not so much to know many more things, but to practice the learning technique required to remember things.

Mum: Do you want to see your test results?

A-One: Nah.

Pondering the good working memory results, and recalling that his previous neuro-psyche tests indicated a weak working memory, I asked him if he was willing to do a little exercise that would take only a minute (a working memory test).

Mum: I'll give you five numbers and I want you to repeat them back to me - backwards.

A-One: OK.

Mum: 7    3     9     5     8

A-One gazed down with a look of concentration on his face.  After about 15 seconds he looked at me and giggled.  He looked down again for about another 10 seconds.  Looked up, giggling again.

Then, tumbling the numbers out in quick succession:

A-One: 85937!

Not so enthusiastic

As excited as I have been about using CogStateTM to independently baseline A-Ones's cognitive functioning, and getting ready to try him out with C8 - Kids Cognitive Cross Training, I don't exactly have an enthusiastic partner in my venture.

Last night A-One went to bed early.  His sleeping patterns have become more erratic lately because he's been playing WOW on and off both day and night. However, after last night I thought 'You beaudy!  He's had a really good night's sleep.  His brain will be fresh. What a golden opportunity to begin the CogStateTM practice tests!'  I had been 'warming' him up to them over the last couple of days. Waking him up mid-morning:

Mum: Hi A-One. Time to get up. After such a good night's sleep, let's get started with your round of practice tests today.  How about you get up, eat, have a shower (it's been several days), and we can get started.

A-One: OK, I'll get up, but we'll see about the practice tests.

Later on as he was having breakfast ...

Mum: When will we get started? This afternoon sometime?

A-One: No! I'm not doing it today!

Mum: A-One, this is a golden opportunity because you had such a good night's sleep! Your brain will be on fire!

A-One: I'm not doing it today! 

Mum: The scientists have proven that you need adequate sleep, nutrition, physical exercise, as well as mental exercise for your brain to be healthy, so it's important that you've had adequate sleep to do the tests.

A-One: How do they know that? I'll prove that I can be fine without even 5 hours sleep!

Mum: Do you see that this brain training work is about helping you be able to have a job, and not just a job, but a good job? What will you do instead today?

A-One: Other things.

Mum: Do you think your WOW friends would be happy for you to spend some time away from them, improving things for yourself?

A-One: Yes.   

Mum: Well, can we do it tomorrow?

A-One: Yes.

Mum: What time?

A-One: I don't know!

Mum: How about 10am?

A-One: OK.

Mum: It may take about 3 hours all up.

A-One: Three hours! How come?

Mum: The practice will take about an hour or more, so that you get used to what you have to do.  Then we do the real baseline test, which will take just as long.

A-One: No, we're doing only the first part.

Mum: So when will we do the second part?

A-One: The next day, Sunday.

Mum: I can't do it Sunday because Dad and I have something on Sunday morning.

A-One: Well, whenever is the next time!

Mum: You do realise, don't you, that improving things for yourself can start right now?

So instead today, I'm blogging ... and he's WOW'ing.

An online service and other links

Last night I was following up some of the organisations represented at Friday's workshop at UQ.  A partner of Synapse is The Developing Foundation based on Brisbane. It provides a link to neuro-developmental therapy programs which include online consultations and assessments.  The site refers to brain neuroplasticity and lists experience with developmental delay, global developmental delay, and PPD-NOS.  There appears to be a great deal of alignment between the online therapy programs and my objectives - do they also incorporate online brain training?

An Australian researcher into Autism, from Macquarie University in Sydney, blogs at Cracking the Enigma.  Macquarie also hosts the ARC Centre of Excellence in Cognition and its Disorders (which doesn't list UQ as a collaborating or partner organisation.)  More leads to follow up.

Assessments

With our growing concern at the prospect of long term unemployment, earlier this year we took A-One to a neuropsychologist for some vocational guidance. She did some assessments with him, which essentially validated the same impairments that tests had revealed when he was 12 years.

At that time he was diagnosed with Pervasive Development Disorder - Not Otherwise Specified(PDD-NOS) at the mild end of Austistic Spectrum Disorders (ASD). To me that seemed to mean 'I Don't Know', so it wasn't very helpful to us in finding appropriate help, although we had done speech, physio and occupational therapy with him when he was little.


Nevertheless the educational psychologist working with him when he was 12 did some emotion face recognition work with him, and helped him with strategies to respond to bullying.

Today, I think he is sensitive to others' emotions and can respond to them, but not necessarily with a great deal of nuance.