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.



3 PBs!

A-One fitted in his Lumosity training around computer games today.

He gained 3 PBs, one being the vowels game now that he knows what vowels are: 



Speed

Speed: 47.9th percentile!
Memory: > 20th percentile
Attention: ~20th percentile
Flexibility: 15.5th percentile
Problem Solving: <2nd percentile

We looked at his result trend for each category.
He 'I know Mum''d me when I started to comment that his attention seems to be plateauing.

His problem solving had been improving, but of late it's taken a dive.

Clocks exercise?  Not a chance.  The sage declared:  'I don't need to do it every day to get the results I want.'

Like last Wednesday, he received a phone call to come into work earlier than usual.  He hadn't remembered what time he left, or what bus he had to catch.  So he went through the exercise again - successfully.

5-handed clocks

With A-One being turned off the clocks exercise, I re-read Norman Doidge's summary of the Arrowsmith school approach. A-One had been zooming through the 3-handed clocks, and had elected to go straight to Legendary level for his latest X-Box game, so I thought he might respond more positively to a greater challenge.

I decided to create a page of 5-handed clocks with the hands already on them.  That meant that A-One had to read the times rather than write the times.  Where the Arrowsmith school uses 1/60th second for the 4th hand, I instead used milliseconds and microseconds on two 'sub-' clocks within the main clock, because milliseconds and microseconds have practical application. I showed them to A-One after I had printed them out, and he once again stated emphatically that he wasn't going to do them.

I let that go so that A-One could do his Lumosity training first.  I noticed that he's starting to use the 'pause' button on some of the games. Even though the image disappears during a pause, it gives him time to think.  Also for one of the games, whenever he made a mistake, instead of continuing on with the game he went back to the start each time.  So it seems to me that he is becoming 'hooked' on achieving good scores.

He's now over the 15th percentile overall, and his speed is over the 45th percentile. Memory and attention are around the 20th percentile, and flexibility a bit lower than that.  Today he went down in problem solving, to less than the 2nd percentile.  I've told him he needs to relearn his tables and number facts to improve on this one. 

When he and his sisters were young, I used to play songs of tables in the car to school every day, and once upon a time he knew them all. At school the children weren't drilled on their tables like we were when I was at school, and I don't think any of my children would have learnt their tables but for those songs. For them it seems to have been use it or lose it.





I raised the new clocks exercise again:

A-One: No! I don't need to do them! I'm not going to do them! Two hands are all you need to read a clock ... I'm going to the toilet.

Fifteen minutes later (I measured it this time), he came back to resume his computer game.

Mum: Can I just show you how these clocks work, without you doing the exercises?

A-One: Alright.

I explained a millisecond, and a microsecond.

A-One: What do you need those for?

Mum: They are usually used in science, in laboratories, and sometimes to measure how long it takes to access data on computer discs.

Using the first clock as the training example, he made an error reading the hour hand but was able to correct himself when I pointed it out.  He was willing to read the time on the second clock too.

Mum: How about the next one?

A-One: No! No more today!

Mum: How many milliseconds in a second?

A-One: 1000

Mum: How many microseconds in a millisecond?

A-One: 1000

Mum: Fantastic! You know, you're not slow in picking this up. Do you remember when you first started this only a couple of weeks ago that you didn't even know how to read the half hour? And look what you can do now! All you need is practice so that you can do it quickly. Like swimmers - most people know how to swim, but it's those who train and train who swim really fast.

By that stage I was talking to one ear - the other was already under the headset.

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.

Clocks are only for telling the time!

A-One duly completed his Lumosity training this morning.  He gained a new personal best for the flexibility game which requires him to recognise shapes, but continues to plateau (down actually) on memory and problem solving.  His speed is now over the 40th percentile, memory and attention up around the 20th percentile, but problem solving remains doggedly around the 2nd percentile. Overall he is over the 14th percentile for his age group.

When I mentioned moving on to the clocks and reading comprehension:

A-One: No! I know the clocks! I don't need to do any more clocks!

Mum: The next stage is to add a 4th hand.

A-One: No! I'm not doing any more clocks!

Mum: You realise it's about training that part of your brain that is good not just for reading clocks, but for other things too?

A-One: No! I don't need to do that!

Mum: OK. Well let's move on to some reading.

A-One: No! I don't need to do that either!

Mum: The reading this morning is different from last week's.  (I had planned to use the first paragraph from the Inquirer section of The Weekend Australian.)

A-One: No! My reading's OK.

Mum: Do you realise why we're doing this?  To improve your chances of getting a job so that you can keep yourself - especially after we're gone? What will you do then?

A-One: I don't know. I don't want to talk about it anymore!  Stop trying to make me do it!

A-One immediately brought up RuneScape and started telling me more about a feature that he'd pointed out to me yesterday.

Games, games & bills

Over the weekend A-One completed his daily brain training with Lumosity.  His BPI continues to steadily increase, with improvements in speed, memory, attention, and flexibility, but his problem solving remains determinedly around the 2nd percentile. By Sunday, his speed was almost at the 40th percentile, although he may be plateauing for memory.

 

He was telling me about his progress with his latest game purchase, Halo 4.  Playing it on the X-Box because his laptop is still out of action, he was explaining that there are four levels: Basic, Standard, Heroic, and Legendary.  He decided to start at Legendary and is already up a couple of levels! (Although he says it takes longer to complete a game.) Not content with restricting himself to the X-Box, he is also using another computer to play the online game Runescape.

As an aside, he was asking about how some online payments work, and noticed his board payment in  the transaction statement for his bank account.  We took this opportunity to talk about some living costs, using a household bill as an example. I don't have much confidence that any of it registered, however we'll keep trying to share cost of living realities with him, hopefully to provide increased motivation for brain training.

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.

A random act of kindness

A-One's laptop died today.  He did his brain training in the study, drawing my attention to the cafe (memory) game where he's surging forward.  Only two PBs today, but his overall BPI is now almost at the 10th percentile for his age group, which is a good advance on when he started.

Mum: Did you have music going?

A-One: Yes, but I'm not paying attention to it.

Mum: Did the music have lyrics?

A-One: Yes.


As he was sitting at the computer, he mentioned that he gave some money to a couple yesterday near his work.

They were asking people on the street for money. From Toowoomba, they had a sick baby and were just back from the hospital. Having borrowed a car which had run out of petrol, they couldn't raise the owner. A-One gave them $10.

A-One: That was kinda like a random act of kindness wasn't it Mum?

Mum: Yes, it was, and very good of you.  Do you think they were genuine?

A-One: I don't think they were playing me, Mum.  She looked really worried. The baby was in a pram, although I didn't quite see the baby.

...

Before we started the clocks exercise we talked about a daily routine for his brain training.  He is still unwilling to agree to a set time even though he follows a pretty consistent routine from 2pm onwards: shower, pack his bag for work, eat, spare time, clean teeth, head off to the bus.

Mum: So what about setting a time for brain training?

A-One: Well, clearly it needs to be before 2pm.  But I can't say a time, because there are other things I want to do too.

Mum: How much time do you want to allow for the other things, so that we can work backwards to figure out when you need to wake up?

A-One:  I don't want to talk about this - it's wasting time.  Let's just get this over and done with so I can do other things.

He whizzed through one page and would go no further.

Forging new neural pathways requires significantly more than 20-30 minutes per day.  At this stage, if I mention the 3-4 hours per day that is spent at Arrowsmith schools, I expect I'd see the heels dig in big time.

It's all in the timing

A-One came home from work tonight grumbling 'I don't want to talk about it!' as he came through the door.  We hadn't received our usual phone call to come and pick him up at the bus stop, so his dad went out to look for him.

Some time later I asked him if he had been told tonight that he had been too slow.

A-One: Yes, I received some feedback.

Mum: This has happened before hasn't it, in your other job?

A-One: It was a one-off.

Mum: How can we fix this?

A-One: I don't want to talk about it.

Mum: OK. I'll just put one question to you - you don't have to answer me.  Do you want to fix it?

Our long experience of A-One is that even when he knows the job, he has days when his time management is just way off.  He is unwilling to let us record potential factors such as how much sleep he gets because he always insists he gets enough sleep.  I know that he rose earlier than usual today - so did he get less sleep?

Earlier tonight, as he was riding home in the car:

Dad: What if you wrote out a plan of what you have to do at work - to keep you on track?

A-One: I know what I have to do!

I don't doubt that. Yet how do I get him to understand that it's not about knowing what to do, it's about timing what to do.

Several months ago I decided to write out a very detailed plan for preparing a simple evening meal for A-One to follow when he was rostered on to cook. I was tired of coming home at the end of my work day only to push A-One to get started on his job, dealing with his resistance when I was tired too.

Specifically, I thought carefully about the tasks that needed to be done in parallel, and how the oven timer could be used to help A-One follow a time plan, even when he already knew the steps for the job.

After that, I was able to come home to a cooked meal!  I noticed that each time he was rostered on to cook that meal, he always used his meal plan.

In a couple of days I'll ask him if we could write down all the steps for his paid job - he can usually describe really well what he has to do.  If I can work with him to put times against each step - so that he has a 'recipe' to follow when he is at work - he may be able to achieve more consistency.

...

At Scouts, his nick-name was 'Turbo'.  Not.

Patience!

My regular physical exercise includes cardio and weight/resistance work.  I wonder if negotiating with A-One also gives my mind a mental workout.  My father-in-law commented once after A-One spent some holidays with them, "A-One is such a blessing. He really teaches you patience!"

After feeling despondent on Friday, I stepped back a little for A-One to choose his own time for brain training over the weekend (only Lumosity, no clocks).  In the context of WOW, we had some discussions about agreeing with others to do things at or by a certain time.  A-One understands the concept, ably articulating the courtesies about time commitments when playing WOW with others.

So how do we help him translate that to real life! I am endeavouring to incorporate some sense of timing/planning in our work together.  That is probably the most disabling of his cognitive impairments when it comes to his employability.

Anyway, he completed his brain training on his own for both days, again improving his overall Brain Performance Index (BPI).

This morning, he arose, completed his morning jobs and went straight to his brain training - again on his own.  I was on the treadmill when he came out beaming, "I've just unlocked the next level in the cafe game!"  We looked at his results, and his BPI chart rose more steeply today - yay!

Before we took up the clocks again:

Mum: I'll be finished my exercise in about 20 minutes, then we can get on to the clocks again.  This time we'll add a second hand.

A-One: Why do I need to do that?  Second hands aren't important to telling the time!

Mum: Mostly, that's true.  The clocks exercise isn't just about telling the time.  It's about exercising that part of your brain so that you can understand concepts and ideas better.  When you read something, you can read it very well, but you don't always understand what you are reading.  This exercise will help you understand what you read better.


I'm basing this on Barbara Arrowsmith-Young's experience where, after 3 months of doing increasingly complex clock exercises, she was able to read philosophy and understand it!

I had added seconds to the same exercises that he had done with just 2 hands, but kept the old exercises out of sight.  We started by looking at the second hand of a clock, so that he could count the 60 seconds around the clock for a minute.  Once he got the hang of that, he managed the first page of clocks pretty well.  I observed that for every clock he counted in fives around the clock for the second hand.

A-One: That's all I'm doing today!

What A-One doesn't know yet is that I plan to incorporate some comprehension testing into our program.  I may use a book of short stories, and start with a single paragraph, asking him what he thinks the key point is and what the story may be about.

When it suits me!

With the grudging withdrawal of the music, A-One's level of co-operation has not been so high today.  When it was time to move onto the clocks exercise:

A-One: No! I'm not doing it!  I'll do it later!

Mum: I need to finish this work with you today so that I get on to other things.

A-One: I'll do it when it suits me! Not when it suits you!

Mum: I need time to write it up, and if we do it later I'll run out of time.

A-One: Why do you need to write it up?

Mum: So that we have a record of what works and what doesn't work for you. 

A-One: I'm not doing it now!

Mum, feeling rising frustration and disappointment: Please, can we do it now? Don't you want to work in with me on this?

A-One: Yes, but we can do it later.

Mum: Do you not want to do it now because you want to go back to watching the movie?

A-One, unable to stop a chuckle rising: I'll only watch 15 minutes; I won't watch the whole movie.

Mum, knowing A-One's '15 minutes': It'll probably only take about 5 minutes to work on the clocks.

A-One: How many pages?

Mum: Only one today.  Next week we'll add in second hands. Then there's millisecond hands, microsecond hands.

A-One: Second hands move all the time! How can you do that?

Mum: It's not so much about learning how to tell the time; it's about exercising that part of your brain that understands relationships between things.

A-One: I don't need to exercise that part of my brain!

Mum: Can we do it now?  The other things I need to do will mean I'm out of the house later on.

... A-One moved to the table with the clocks exercise.

Again he got the first one wrong, applying the same principle to the big hand as to the little hand i.e. between 2 numbers rather than using the whole 60 minutes.  After reminding him to count in 5s around the clock, he zoomed confidently through the page.  I noticed at times that he touched his finger to the numbers as he counted in 5s around the clock.

I'm now reminding myself to tell him only what's planned for the next session, not for later sessions - it's too much for him to contemplate, especially when he's not being co-operative.

He's now watching the movie!

I don't need to turn the music off!

I noticed that A-One was still up at his computer at 2:37am this morning, and he still had some washing up after dinner to do which would make his going to bed time even later (not an unusual occurrence)!  Again I had no idea what time he went to bed.

So this morning when I had some other things to do, I let him sleep - to give him the best chance of working well on brain training after adequate sleep.  (He had done the washing up.)

Late morning my husband called and after a brief conversation I mentioned that I was about to wake A-One.  'Good luck', he said.



A-One rose willingly enough and we talked about his next steps for today: breakfast, shower, dress, brain training.  He came down for breakfast and turned on a James Bond movie while he ate (including last night's uneaten dinner).  When I saw his empty plate, I reminded him about the next step.  He decided he'd shower later at his 'usual' time.  I asked him to give me a hoy when he was dressed.

After about 15 minutes (or so it seemed to me) I called out to him.  'Wait a minute!', he said. Fairly soon though he came downstairs, opting to work in the study today instead of his room.

As we were about to begin, I noticed that he had a YouTube music video playing as he brought up the Lumosity login screen.

Mum: Better turn off the music while you work.     

A-One: I don't need to turn the music off!

Mum: It's important to be free from distractions while you work on your brain training.

A-One: It doesn't distract me.

Mum: How do we know that?

A-One: It doesn't!

Mum: How about we prove that?

A-One: I don't need to turn it off!

Remembering that he had had headphones on for all the other brain training this week, thinking it was to help him hear any sounds related to the brain training, I asked him whether he had had music on the other days.

A-One: Yes.

This revelation put me off balance.  Freedom from distractability is part of being able to stay on task!

Mum: Will you try it without music just for today?

A-One, closing the music clip: There! You happy now?

There were a few more 'stupid' comments today ... the game of course, not A-One!  He did much better on the vowels game now that he knows what they are. He's doing really well with the cafe orders, remembering everyone's name and giving all the correct orders.  The good news is that while some of his scores were not his best, his overall comparative results show no category now in the 1st percentile!  Today, memory and attention showed as his strong areas. 

I Googled for the effect of music on cognitive performance.  Several results came up, a recent one being http://www.usatodayeducate.com/staging/index.php/campuslife/should-you-listen-to-music-while-you-study. 

So should I argue the case again tomorrow?

I might just ask him what music he plans to listen to, and then our negotiation might be on the choice of music instead.  I imagine that calming instrumental music, rather than music with lyrics might be a better choice, especially when doing any language-based exercises.

It's about when you don't know how to do something

After I came home I woke A-One for today's brain training. 'Just a minute!' he said.  That's his favourite phrase when he's called for dinner too; we often finish before he arrives.

First we attended to some banking - we recently set up his internet banking and he's getting the hang of it quite well.  He remembered a call centre operative's instructions from the other day and could identify each recent transaction in his statement.


His online training went well again today.  He gained 4 personal bests out of 5 games, and his chart is still showing improved scores.  Even when he made a mistake, he seemed to know it before the game alerted him. Only one of his recorded cognitive competencies is still in the 1st percentile, and his memory and speed are still his best scores.

No protest from him when we resumed the analogue clocks work. I suggested he review the work we did yesterday, and he spent several seconds (sometimes up to 6 or 7 seconds) looking at each clock face where he had drawn the hands yesterday.  I asked him some review questions and talked about 'to' and 'past' the hour. 

For today's clocks, 10/20 to- and past- the hour, and 5/25 to- and past- the hour, counting in 5s would be an advantage, so I checked that he could do that, which he had no trouble doing.

On looking at the 10/20 page:

A-One: You've 'mixed up' the 10s and 20s times. It would be better if you had put all the 10s together and all the 20s together.

Mum: I could have, but that sounds too easy.  I wanted to challenge you.

A-One: Why do I need to be challenged?

Mum: Because it's only when you have to work at it that you are learning. When you don't know how to do something, that's a really precious time.  It's the very best learning time because it's only then that you can forge new neural pathways.  Once you know something, you're not changing your brain.

A-One:  Silence.

No protests, so I thank god for small mercies.

After drawing the big hand in the wrong place on the first clock, I explained the one complete rotation in 60 minutes again, and asked him to count by 5s up to 60 while tracing his finger through each of the numbers.  He was then able to self correct the first clock. 

He completed the page, sometimes copying the placement of the big hand from an earlier one.  He did them all so well that I told him it's now time for a 30 second celebration dance. He just looked at me, but I did a sitting dance anyway!

A-One: That's all I'm doing today.

Mum: How about just trying the first one on the next page?

He did ... and completed the whole page!

Tomorrow, none of the minutes end in '5'.

Met Barbara Arrowsmith-Young this morning

My husband and I attended a breakfast talk by Barbara Arrowsmith-Young in Brisbane today.

Barbara's talk reinforced to me that the strength of the Arrowsmith program when compared to online brain training is that the Arrowsmith program is carefully focussed on a person's weak cognitive function, keeping it isolated from cognitive strengths which might compensate.  Whereas online brain training is likely to be more general.

I also found the talk very worthwhile in meeting some people in Brisbane who have an interest in this area, including those who have a special interest in any adult programs.  I came away with some business cards to follow up, as well as an Arrowsmith Parent Adocacy Guide - to gain support from schools to implement the program.

Again I came away convinced that evidence based research and results will be important to brain training programs becoming more mainstream.

Analogue clocks

We added a change of scene today to start work on analogue clocks. That's how Barbara Arrowsmith-Young got started on her own exercises, and from the Principal's pack I received from the Arrowsmith school, the description of the brain function improved by this exercise seems to fit A-One.

From what I have read, Barbara put hands on her clocks and drilled herself to tell the time.  Her goal was to improve that part of her brain that understands cause and effect and mathematical relationships.

I'm starting the other way around. I have created pages containing 12 clocks without hands, each with a time underneath represented digitally (A-One knows digital times). The exercise I'm asking A-One to do is to write the hands on the clocks.  In time, we can try it the other way round too i.e. having him read the times represented by the hands.

Page 1: 6 x on-the-hour times, followed by 6 x half-hour times
Page 2: 6 x quarter times, followed by 6 three-quarter hour times
Page 3: 6 x (10 or 20) past-the-hour times, followed by 6 x (10 or 20) to-the-hour times
Page 4: 6 x (5 or 25) past-the-hour times, followed by 6 x (5 or 25) to-the-hour times
Page 5: 6 x (any other number) past-the-hour times mixed with 6 x (any other number) to-the-hour times



A-One was fine with the 6 x o'clock (on-the-hour) times. When we got to the first half-hour time, he was stumped.

I drew diagrams of the large hand travelling round the clock once an hour, and the small hand travelling between two 'numbers' each hour. With assistance he was able to draw the first half-hour time, but his comment was 'Even though it's right, it doesn't seem right.'

By this time, he was slouching in his chair.

Mum: Take three deep breaths - oxygen to your brain helps you stay alert.

A-One: I don't need to do that.

Mum: OK. Stand up and shaaaaaaake yourself about.

A-One: No! I don't need to do that.


Nevertheless, he sat up straighter in his chair. That enabled him to declare that he was doing only as many as he was comfortable with!

As we tried a few more, he would refer back to my diagrams, and ask how many pages there were to go. A couple of times he drew the little hand between the wrong two numbers, but insisted it was between the correct two numbers. I used a ruler to show him where he'd drawn his hands in relation to the numbers, and his retort was 'Even though it looks wrong, it's right!'

We got to the end of the second page ...

Being work ready

A-One was willing enough to rise this morning when I woke him, and brought up the Lumosity login while still in his pyjamas. He was about to begin without me.

I reminded him that a work ready frame of mind goes with this important training and that showering and dressing sets the right scene and attitude for a day of exciting challenges! That his brain training is also about moving to a state of mind that goes with full-time employment, and the sooner he moves into this state, the sooner he can start building more success into his life.

I also reminded him that I need to be with him while he is training because I am recording what helps him and what doesn't. While not saying it out loud, I also want to be there to show enthusiasm and to encourage his efforts. 

He insisted that all he would do is dress, and shower later.

So on to today's brain training - improved results on most tests today, gaining a few more personal bests. He even got to the next level for one game - the cafe game where he gave the wrong orders yesterday. Yay!

What's a vowel?

Last night A-One told me that I didn't need to be with him while he did his brain training. 

Given that he's needed to be kept on task all his life, I wasn't willing to leave it to him. I explained that I was blogging about his experience with brain training, so it was necessary for me to work with him on this.  He seemed to accept it.

Yesterday, while he accompanied his dad to an audio/video shop he bought Halo 4 for the X-Box.  I have no idea how late he stayed up playing it, but he did check with me this morning on the brain training time because he was feeling sleepy, and was willing enough to be woken again.

One game today was about vowels and even numbers.  He pressed on with the game but didn't do very well. 

Mum: Do you understood what the game requires?

A-One: I don't know what a vowel is.

Mum: Vowels are the letters 'A' 'E' 'I' 'O' 'U'.  Only 5 of the 26 letters of the alphabet are vowels.  Consonants have harder sounds. All words must have a vowel.  You can't have a word that is only consonants, but you can have a word that is only a vowel e.g. 'a'.

A-One: I don't understand.

I explained again, but emphasised that all he needed for the game was to recognise any of the 5 vowels. When I asked him about trying it again ...

A-One:  No!  I'm doing only 5 games a day. I'll do my 5 today and that's it!  That's all I'm ever doing!

Mum: Do you want to help your brain get better?

A-One: I will.  I don't need to do more than 5 games a day.

So he proceeded with the next game, one in which he needed to recognise faces and orders e.g. for a cafe.  When he tried to give the wrong order to a customer, he insisted that's what she ordered and tried to give it to her 3 times!

Nevertheless he gained some personal bests, one of which was speed! His face lit up briefly on seeing his score, but his overall mood seemed to match 'let's get this over with'.

After hearing Barbara Arrowsmith-Young explain how she developed her first brain exercise for herself, tomorrow I'd like to try A-One on analogue clocks as well as the online brain games. Over the years, we've learnt to give A-One notice about what's planned (and especially after his declaration of 5 games only), so I told him that tomorrow we would try something new on paper as well as the online games. No loud protests, but I guess I'll find out tomorrow.

Now to creating some clock faces ...

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!

Where to from here?

It seems to me that the next stage of this neuroplasticity wave will be to produce a more significant body of evidence based results, presumably with control groups, so that brain training can secure funding to become more mainstream - not just for learning support in schools, but also to help adults such as my son A-One, who missed this boat when he was at school.

 

 

So, if my blog helps to contribute to the evidence base, I hope it ultimately means improved accessibility to brain training for people of any age with cognitive impairments.

Australian and Global scene

The Arrowsmith school's business model is to work with established schools (> 5-10 years) to take up the program. An Arrowsmith pilot is planned for Sydney, and I've been in touch with the Head of Diverse Learning Needs at Catholic Education in Sydney who had been instrumental in making that happen.

As it turns out, Barbara Arrowsmith-Young is currently in Australia: November radio interview



I've also been in touch with the Program Director of the Shaping Brains project here in Brisbane. That project is funded through The Benevolent Society, and undertook an independent evaluation of brain training programs available globally.


I've started to investigate some of what's available online:

Lumosity
directors with backgrounds in equity fund management, games design, and neuropsychology

IQMindware

Cogmed
for working memory - 5 weeks with a weekly coaching review

Fast ForWord
3 month program - look and feel pitched at primary school, although the principles of the exercises are relevant to any age

Posit Science

Dual N-Back
a free and challenging app for memory and intelligence

Brain Gymmer
seems to be designed to have fun while you improve your brain

A glimmer of hope ...

In May of this year, a good friend emailed me referring me to a recorded Radio National radio interview with Barbara Arrowsmith Young , thinking that there might be something in it that could help A-One. I had heard about Barbara because she was 'Chapter 2' in Norman Doidge's book The Brain that Changes Itself about the neuroplasticity of the brain. At the time I had thought there may be something in this to help A-One, but daily life and work commitments took over at the time.

When I listened to Barbara's interview, she said something that made me sit up and take notice: she had had difficulty reading analogue clocks. I knew someone else who had difficulty with that: A-One was fine with digital clocks, but he always needed to check if he was reading analogue clocks correctly.

I started to look into this further. I emailed the Arrowsmith School in Canada. At the time I asked whether they have anything available online, or even better whether they were collaborating with any games developers. Imagine the possibilities if brain training was built into highly addictive games like World of Warcraft! All those despairing parents of especially teenage boys who spend hours and hours playing games - what if all that game playing could improve their brains!

As it turned out, the Arrowsmith school does not have an online offering, but they sent me their Principal's pack. As I read through it, I mentally checked off the list of impairments for which they have developed exercises: A-One's OK at that, OK at that, OK at that, THAT'S A-One!, OK at that, OK at that, THAT's A-One! From my mother's inexpert eye (I'm not a professional educator or psychologist - my background is in ICT), it sure seemed to me that here were some exercises that could help A-One. And the Arrowsmith school has been using brain training to help people with cognitive impairments for 30 years!

At the same time, members of my husband's family had been reading Barbara's book The Woman who Changed Her Brain and in knowing A-One, had also thought that there could be something in this that could help him. As I read the book myself, I thought this is the closest thing to A-One I'd ever read, and seemed to fit him more than any of the therapies that we had done with him in his early life.

Barbara's writing was inspirational and brought me to a deeper level of compassion and insight for my son.



I sensed that the planets were aligning. Fairly recently, the opportunity arose for me to cease full-time employment (at least for a while), so I am about to embark on a program of brain training with A-One, and to assist in whatever way I can to make brain training more accessible in Brisbane to help people with cognitive impairments.

Cognitive Impairments

Our A-One is friendly and socially engaging.  However he has some cognitive impairments. The following summarises the results of his recent tests:

Average

vocabulary

general knowledge

literacy skills (reading and spelling)

 

Low Average
verbal reasoning
visual observation
planning, organisation, spatial/perceptual
numerical reasoning
auditory attention span
auditory working memory

Impaired
processing speed (he has always needed to be kept on task)
complex thinking

Summary
A significant discrepancy between language/communication and literacy skills and applied skills i.e. planning/organisation, speed of initiating and completing timed tasks, complex thinking/reasoning tasks
Oh... and don't get a drivers' licence

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.

Life since school

Some time after A-One completed school, a family friend offered him some office work in the mailroom. He protested vigorously at the idea of working 5 days a week, even as I virtually pushed him out the door on the first day. By the time he came home, we didn't hear any more protests about that.

He enjoyed the daily company of working with people, however over time it became evident that even though he knew the work backwards, his productivity was low. That's when we began the journey of the supported wage scheme and disability pension. Yet the variability in his productivity proved too much of a strain for the workplace, and that job came to an end after 12 months.


A-One became unemployed. We wanted to give him some space to see what might interest him; to allow him to start taking charge of his own life. Pushing him had been tiring for all of us.

With both A-One's father and me working full-time, we found that little happened in job searching unless we sat beside him searching job sites and assisting him with applications - which were few.

 

Isn't there more?

My son, A-One, completed high school a few years ago, gaining his senior certificate. For A-One's father and me, it had been a bit of a hard slog trying to help him.

While A-One could read and spell well, his comprehension was poor.  He had a good memory for facts, but was unable to apply himself to any kind of analysis.  Maths had always been a challenge.  He could not grasp the concept of planning his time.

Today, he is on a disability pension and has some part-time unskilled work.  He is nocturnal, and loves to play World of Warcraft.

I  believe there can be more in life for him.