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!

Speak to me of love ...

Another conversation this morning about making brain training a priority.

Mum: Get on to your brain training this morning so that I can write it up and then my day is clear for other things.

A-One: Can't I just tell you when I've done it?

Mum: I'm the busy one, and I need you to work in with me so that I can plan my day.

A-One: I don't have to do it to suit your convenience! You don't have the authority to tell me when I have to do it.  (Doesn't he have great verbal skills?)

Mum: Well, yes I do. It is a requirement of living in this house that you complete your brain training by 10am every day.  

A-One: You don't say things like that to your immediate family!  Maybe to others, but not to me, and I don't see you saying it to .. (A-One's sisters).

Mum: Your brain training is that important! Successful people decide what are the top 1-3 things to do every day, and don't let other things get in the way - they make time for the important things first!  I'm trying to show you successful life skills.  I've given up work so that I can work with you or find something to help you.  I have made this my top priority.  (I felt tears rising) it's because I love you A-One, not because I want to make your life difficult. I've researched this work, and you will have to give me the benefit of the doubt about its value.

A-One: Okay.

On reading this, those who subscribe to a self-directed learning philosophy may squirm. It's clear what my priorities are for A-One, what about his? They may ask, how is that respectful of him? Yet our experience of A-One is that he lacks initiative. He lacks the capacity to translate an abstract goal into real concrete steps, and from what I have read, I think this passivity is one of his cognitive impairments. Last year, the neuropsychologist told us to be directive in taking positive steps.  She commented that waiting for him wasn't working, was it?

In the end, we want him to know he is loved, and our drive (and frustration) comes from there.

 

His scores today were similar to yesterday; speed was down, but the others were OK. A couple of new games.

As we looked at his scores, I explained to A-One the importance of two types of games based on his previous capability assessments: information processing and working memory. We looked at the games available, noting those that exercised these capabilities. I told him that if the program doesn't serve up these games to him, he needs to add them in as 'extras' every day.

Time will tell whether I've got through to him for just today, or for the days ahead too.

No writing!

I woke A-One an hour earlier this morning and let him know the time for brain training.  I mentioned that I wanted him to try some alternative problem solving games, those that did not involve arithmetic, so that we could see how his problem solving goes when it's not about maths.

He brought up the login page at my request. After he worked through the games, grumbling that whoever wrote them is mentally challenged, we looked at his results. No PBs today; in fact he went down in 3 of the games.  However his speed is now over the 50th percentile at 52.6!  Overall he is at the 16.5th percentile.

When he completed the set games, I asked him to choose one of the non-maths problem solving games.  He had a choice between shapes and words, both of which required him to discern the hidden rule. He chose the shapes.

He read the rules of the game and saying it still didn't make sense he proceeded to play anyway.  The game requires the player to guess whether a shape fits the rule or not, so the first couple of tries is trail and error to discern the rule.  However when he got a 'X' on subsequent guesses, he consistently wanted to go back to the start.

Mum: You don't need to go back to the start each time you get one wrong.

A-One: I can't get any wrong.

Mum: It doesn't matter whether you get it wrong, because that's how you find out what the rule is.

A-One: No, I can't get any wrong.

Nevertheless, he seemed to be getting the hang of it, but wouldn't play it again.  I'll be very interested to see how he goes over the next week, as long as he's willing to add the game to his daily list.

We then took up the clocks exercise to a familiar refrain. 'This is a waste of time.  I have better things to do,' as he sat down at the table.  He was willing to try 2 clocks only, taking a while to work them out and making several errors.

Mum: Where did you get the 47 (minutes) from?

A-One: It's correct!  That's what I say it is!

Mum: Let's count them up.

A-One (sighing): OK. It's 52.

After the clocks, we took the first couple of paragraphs from the Inquirer section of last weekend's The Weekend Australian.

A-One: I'm only reading as far as I want to.

...

Mum: Where did you read to?

A-One (without waiting for me to read): There.  It's saying that the government and people are spending as if nothing bad is going to happen to the economy, and the Prime Minister is saying Australia has a good economy.

Mum: OK. Now I want you to write that down.

A-One, quite vociferously: No! No! No! I'm not going to write it down!

Mum: OK.  I'm just letting you know that writing it down in your own words will be one of our future exercises.

 

 

 

Well do I remember the challenges A-One felt at writing his assignments when at school.  I recall one of his teachers wrote one of his assignments while he dictated.  She knew he knew the work and could see that writing it down was a barrier to his succeeding. This year's neuropsychologist's report also recommended something like Dragon Dictate if he needed to write assignments.

 

However, that's the compensatory approach. The Arrowsmith approach is to exercise, exercise, exercise the weak cognitive function.  I just need to find the right level of challenge so that he doesn't refuse.



Objectives: Best Practice AND Online

On Friday I attended an all-day workshop at the University of Queensland for Research Officers working in NGOs. Its purpose was to build capacity for research in the Human Services NGO sector, through building relationships between the University's researchers and the service providers/practitioners in the Human Services sector.

I don't work for an NGO, however my interest was to discover more about how research works in the Human Services sector, access to funding for research, and how that might be applied so that specific, targeted brain training becomes more accessible.

I found it a very worthwhile day, meeting people working in the NGO sector and researchers from UQ.  In particular I met people from Synapse, the not-for-profit association supporting people with acquired brain injury (ABI), and the Centre of Excellence for Behaviour Support from UQ (based in Ipswich).




The latter is funded jointly with the Queensland Government to improve the quality of life for adults with intellectual or cognitive disability and challenging behaviour.   This group has developed a framework for developing a comprehensive research agenda for people with intellectual disability and challenging behaviours.  I learnt that the focus of this group is on positive behaviour support, especially for people with severe intellectual and cognitive disability. It sounded like it would be a stretch for that group to turn its attention to those with mild cognitive impairment.  However, the framework for developing a comprehensive research agenda may be a good base from which to start in developing a research agenda for people with milder cognitive impairments.

Based on what I learnt from the workshop, I have drafted my own vision to improve the services available to people who fall between the cracks of 'normal' cognitive ability and severe cognitive disability. How many people are on the disability pension, possibly on supported wage, who with some effective intervention to overcome their cognitive impairments, could move into gainful employment and eventually off, or receive reduced, government support?

My two objectives are:

Objective 1: Evidence-based brain training exercises become incorporated into best practice treatment options for cognitive impairments

Objective 2: Evidence-based best practice cognitive assessments and correlated brain training exercises become more widely accessible through online delivery



I have begun developing the compelling 'why' for various stakeholders:

• People with cogntive impairments
• Carers
• Human Services Providers/Practitioners
• Health Care Practitioners/Specialists
• Educational Services
• Government - Political
• Government - Administrative
• Employers/Business
• Community/Society

Also the How? and the Who?

I learnt that evaluation (efficacy) measures need to be determined collaboratively to incorporate user, practitioner, and researcher perspectives.

...

I wasn't at home on Friday, so no brain training happened for A-One, despite his insistence that I don't need to be there while he does it. 

So what's the problem?

No brain training yesterday.  I woke up late, had some other things to attend to, and then A-One received a phone call from his work to come in earlier.  He handled the phone call very well, saying that he needed to look up the bus information to work out how to get there by that time. He couldn't remember the address of where he worked, so I suggested he look at Google Maps to see if he can recognise it from the map, which he did.  I saw him call up the transport website ('I know, Mum') and enter the 'to' address (checking with me), and figured out which bus he had to catch and when.

A year ago, he hadn't able to do that, or perhaps had been unwilling to.

This morning he resumed his Lumosity training - resplendent in his PJs (I didn't have time to argue the point today).  Again he showed the same steady improvement since he started, gaining a couple of PBs and dropping his score a little in others.  He is now in the 12.7th percentile for his age group, and is almost at the 30th percentile for speed!  So how does that correlate to his feedback that he was too slow at work the other night?

His lowest area is still problem solving, at 2.6th percentile, while all the others are over the 10th percentile.  The problem solving game is all mental arithmetic, and for a generation used to using calculators, I'm not sure that this really tests out problem solving ability in real life. 

I do the Lumosity training too and my problem solving score is much higher, but I think that's because when I was at primary school we were drilled and drilled in our times tables and number facts, so I'm not 'working it out'; instead remembered facts simply pop into my mind.

The neuropsychologist suggested we try mind mapping with him. Is that a compensatory strategy, or does it exercise the problem solving part of the brain?


He zoomed through another page of 3-handed clocks, but would not do another page. 'Only one page a day, that's all!'  He was about to leave, when:

Mum: Wait a minute.  There's something else today.  I want you to read this paragraph and tell me what you think the central point of it is; what it's about.

A-One: This isn't necessary.

Mum: How about we see that?

Perhaps he was too keen to get on to other things too, because he didn't argue the point much either, and proceeded to read the paragraph.  He took longer than I did (reading it upside down) and reached the end of the page which was mid-sentence, showing all the signs of having finished.

Mum: It goes over the page. The paragraph ends here, see?

A-One: I'm reading to the end of the sentence, not the paragraph.  That's all!

Being obvious that he would proceed no further, I asked him what he thought it was about.  He was able to tell me very well, and when I asked a specific question, he answered that very well too.

I'm starting to wonder whether his impairments are more to do with attitude and motivation.  My next thought is to have him sit with me while we peruse accommodation advertisements and household bills, so that he gains some sense of what independent living requires.  We're not trying to turf him out, but we won't be around forever either.

We got started today!

A-One and I started today with Lumosity. 

He had asked me to wake him when I woke up.  So I did.  I woke him, went for my shower ... then woke him again.  He was surprised when I told him that I'd woken him once already.

Nevertheless, I took it as a sign that he wanted to start his brain training.  He had a couple of other jobs to do and thought we'd be doing the brain training 'later', but I reminded him that important things get done first.

First we needed to set the priority of areas of training.  I retrieved the neuropsychologist's report and suggested an order.  He accepted 'speed' as top priority.  I wanted to put 'attention' as next priority, but he wanted to put 'memory' second.

Mum: Can you tell me why you want to put 'memory' next?

A-One: I just do.

Mum: Can you tell me what you hope to be able to do if you improve your memory?

A-One: So that I can remember things faster.

Mum: Do you understand what 'memory' means for these exercises?  It's not like 'what was the last movie you saw' or 'when did you last meet up with your friends', it's more like 'tell me your birthdate backwards'.

A-One: We're not changing it.

So ... we didn't change it.

A-One didn't take a lot of time to read all the instructions carefully; he was happy to get into the games.  The things I like about Lumosity are:

• whatever the results, it's affirming - and compares results to personal bests (PBs)
• its look and feel suits adults

While A-One was happy enough to do the games, he wasn't interested in any extension work today.

We looked at his results compared to others in his age range, and I explained to him what that means.  His results today put him in the lowest 1st to 10th percentile in his age range, but I explained to him that what is important is how he tracks against his PB - and he had improved since the trial we'd done a couple of weeks ago!

With a numerical exercise game I wondered whether he was mentally calculating the answers or remembering the number facts.  He said he was doing the counting mentally in his head as fast as he could (as I had suspected). 

I told him another way to do 9+ sums by turning them into 10+ sums, because 10+ sums are often easier.  While I still had his attention, I put out 14 toothpicks: 9 toothpicks, 5 toothpicks.  I moved one toothpick to make 10 toothpicks, 4 toothpicks.  And he said: So if it's 9+3, you can make it 10+2!  I said 'Yes! Had you known about that?' He said 'No'. 

I was thankful for two things today:

• A-One was willing to look at the toothpicks with me, even though he'd finished his 15 minutes of brain training today
• He got it!

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.