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. 

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.

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.