The Intervention That Could Have Changed My Son’s Life — We’re Building It Now

My son has an extremely rare genetic mutation, called Dias Logan syndrome. In fact he was one of the 1st group of 3 in the world to be diagnosed with it through a genetic programme at Great Ormond Street. Whilst a veeeeery long story, the outcome is that he has a lifelong Complex Learning Disability (CLD). 

He is now 21, at special college and overall is happy, funny and into lots of great things. But he continues to struggle to communicate - with very limited, unclear vocabulary - and needs constant care. This severely limits his autonomy and ability to control his options and environment; something most of us take for granted.

Through another set of circumstances, also too long to explain, I was immensely fortunate to be introduced to Professor Tomas Ortiz - Professor of Medical Psychology and Professor Emeritus at the Faculty of Medicine of the Complutense University of Madrid. 

He has worked on a research programme with kids with autism who were able to communicate and follow instructions, something Joseph is unable to do. The year-long programme involved each young person spending around 5-10 minutes a day using a choice-making software program with progressively more complex tasks. At the time they used a keyboard with only two keys enabled to make choices based on the images they could see on the screen. Over the year the tests increased in complexity and were shown, with EEG brain scanning, to open up new areas of  cognitive function and learning in each pupil's brain, whilst also building attention processes, memory, accuracy and speed of response. 

The key to the intervention is that short daily exercises enable stable neural circuits to be built within the brain, building attention processes and enabling more accurate and efficient actions with, in turn, new capacity for cognitive learning. In pupils with more complex learning disabilities, it might also mean an increase in ability to communicate, providing more autonomy and life options for participants.

According to a parent of one of the pupils completing the program, it was by far the most significant intervention made during his young life. And at the time we spoke, he was then attending one of the top universities in Spain.

When Joseph was six, Tomas agreed to run the programme with him for a year. Everything was set up with personalised images, our voice prompts and the 2 button keyboard technology (the other keys were disabled by literally glueing them together) and progressive software programme. However Joseph was simply unable to connect the screen images and prompts to even start the tasks via the keyboard, so we were unable to engage him in the tasks. 

We will never know what impact the programme might have had on Joseph. Nor where he might be now if he had managed to do it.

At the time, I asked Tomas when such programmes would be introduced into school classrooms. He said that normally it takes about 20 years for successful academic research to become mainstream. And whilst that was around 15 years ago, there is still no indication that anything like this is being run in schools, or indeed anywhere. When I asked him more recently how we could shorten the time to introduce it into classrooms to, say, 5 years, he replied "give me the money and we'll do it now".

Now a technology exists that makes interaction with screens totally intuitive and is globally available: touchscreens. Joseph is an expert in them, able to navigate most devices and do things we never knew he was able to until we saw him doing it. 

As a consequence, myself, Tomas and Peter Imray (an author and expert in Special Education) set up a non-profit organisation called Show Me CIC to explore how neuro-science and touchscreen technology could be used to better support pupils with complex and severe learning disabilities. Since starting, we have worked with 12 outstanding special schools across the UK to develop a Progression Framework for the use of applications on touch screens within classrooms in schools today. We have also learned of, and experienced first-hand, the many challenges in introducing such activities, including lack of funds, teacher time and complexity of technology. 

Whilst originally believing existing learning applications could serve our needs, it is now clear that new software and programs are required for complex learners. These should be built upon a lifetime of neuro-scientific principles and practises developed by Tomas over his career at the forefront of the field. And in particular, the choice-making programme Joseph was unable to access via a keyboard.

And now with the availability of AI, the opportunity to personalise programmes for an individual, learn from their interactions and develop progression based on that learning, has never been greater. So we now have all of the building blocks and ability to deliver Tomas' personalised programmes for ALL pupils, especially those with CLD.

Working alongside the London Metropolitan University, we have developed a prototype software program and parallel research project. The project will deploy the learning software over a school year with CLD pupils within special schools in the UK, with the potential for other countries depending on funding. Each pupil with have entirely personalised software program to maximise engagement and the learning tasks will advance based on their ability and success, configured and guided by their teachers. Most importantly, it has been built within the "no instructions design principles" developed by Show Me to ensure ALL pupils able to touch a screen can access the programs, regardless of cognitive ability.

Whilst we will see how Joseph can get on with this, most importantly we will be able to offer it to primary school aged pupils who will be able to benefit the most from early interventions, due to all of their brain development yet to occur. 

We are currently raising additional funds to be able to extend the research programme and build out the software, allowing us to deliver today what Tomas referred to earlier. We will work directly with pupils and teaching staff in special schools, in multiple countries, and managing pre and post study EEG scanning of participants to measure and prove the results. 

From that programme, and whilst building a scalable version of the software, we will be able to offer the software/apps to all. And then who knows where those young minds will take them.

Please get in touch to find out more, see how you can help, or to join in. 

There are no excuses for us not doing this now; to help those kids in our communities facing the biggest challenges.