Disability Tech Dad - an introduction

My name is Matthew and I am a blogger who uses the name Disability Tech Dad.  I write blogs about my son Macsen, his life and how technology is helping him to live his life and reach his potential.  

Macsen was born 3 years ago with a number of brain related conditions including 4 limb cerebral palsy, cortical visual impairment and epilepsy.  These conditions mean that he is unable to sit-up, hold his own head, control his limbs and his brain has trouble processing images.

As you can imagine dealing with these diagnoses was challenging at first, but my wife (Lisa, an amazing lady) and I are not the type of people who just sit back and complain.  We both set about researching how we can help.  Lisa, with her experience in public health, focused on learning about his conditions and treatment, but as a geek there was only one way I was going to look... 

I've always been interested in technology: as a child I loved computer games, I studied Information Systems at university and have worked in the IT industry for the last 13 years as a programmer and technical manager.  Strangely I've also crossed paths a number of times with education and disability.  Whilst at university I worked as a learning support assistant helping children with dyslexia and behavioural issues, I wrote educational games for dyslexic kids for my dissertation and my first IT customer was a paralysed man who controlled his computer with a head pointer and blow straw clicker.

With this experience behind me and the diagnosis spinning around in head I set about looking for options.  I knew that my son had intelligence, I could feel it and I could see it in his eyes.  Macsen and I have tried lots of cool stuff, we've learnt a lot and had some amazing results.  I use this blog to share our experiences and hopefully show how technology can change lives for children like Macsen!

EyeGaze: Not As Easy As It Looks

EyeGaze.  It's just as easy as looking at the screen, isn't it?  You've seen the YouTube videos from experienced Tobii users, you had an assessment which was amazing, so why when you get your own system isn't it that easy?

I've seen a number of Facebook posts and tweets from other families about their early experiences and they clearly had the same early problems as us. Macsen has now been using his Tobii for about a year and it seems a good time to share our experiences.

Give the right physical support

It took quite a while to get Macsen's physical support and seating right.  As you can see from our selection of photos and videos over the year we tried a number of options:

Each of these options worked at different times.  Supportive holding was used by our therapist during the trial.  This worked well on the day, but was difficult to replicate at home.  Comfortable seating was what we used mostly when we first got the system home.  This worked really well for around 3 months but as Macsen grew it stopped working and he stopped being engaged.  We then  tried lots of Flexibility options including different seating, screen sizes and screen locations; none of them really made a difference.  Finally we had a problem solving session with our physio and Hector from the Tobii team.  We found that with a stander providing high physical support Macsen had the confidence and support he needed.  It allowed him to engage his eyes and now he's now using his computer better than ever!

Expectations

A lot of people were involved in raising the funds for Macsen's system and we were all very excited about sharing his experiences.  I also spent a lot of time investigating the possibilities and watched many videos of experienced users on YouTube.  Also our first assessment Macsen was amazing and had astonishing results, so as you can imagine I had very high expectations of our first session with our own machine.

Our first session and many after that one did not live up to this expectation.. I  retrospect I know that it takes a while to get to know a new technology and how to use it best.  Also I now know that the YouTube videos do not show the full story.  From the outside I'm sure people think that Macsen's journey has been smooth, but I know that I've thrown away 5 times more video thatn I've uploaded to YouTube!

I've tried to summarise in a graphic that shows the difference between what you were sold, expected and experienced. 

The key message in this graph is that our initial feelings and experiences were negative.  But I know that we will end up achieving and feeling better than we could have ever hoped!  With this in mind I have 3 recommendations for new eye gaze parents:

* Prepare - Try the system yourself while your child is sleeping.  Get used to the apps and navigation and even use the eye gaze yourself.

* Relax - If something doesn't work: don't worry, move onto something else and come back later.

* Take your time - Build up gradually and don't try to run before you walk (take a look at the learning curve http://www.tobii.com/en/assistive-technology/global/education/eye-gaze-learning-curve/)

If you have problems

Finally I want to remind all parents that you must ask for help!  Any problems you are experiencing have been experienced by someone else before.  Remember that your reseller wants you to be successful, so do not be afraid to ask for their help!  Also there is a very positive, friendly and responsive community in the UK Tobii Facebook group: https://www.facebook.com/groups/tobiiuk/ 

Finally finally please remember that you will get there!  You and your family will be experts and it will happen quicker than you realise!!!!!

Finally finally finally if your windows control isn't working then double click this icon:

Look2Learn - Macsen's Review

Macsen my son is a very early EyeGaze user.  He had his assessment at 18 months and his own Tobii system at home a few months later.  Macsen has physical restrictions due to his whole body Cerebral Palsy and his brain has difficulty processing images due to his Cortical Visual Impairment.  Although he has these restrictions Macsen shows understanding, feelings and intelligence.  We believe that eye gaze AAC has real potential for giving Macsen a voice in the future.

We are currently developing skills in the first 4 stages of the learning curve (http://www.tobii.com/en/assistive-technology/global/education/eye-gaze-learning-curve/).  Macsen started developing these skills with Sensory Guru's EyeFX using games like Pop, Splat and Splodge.  For his second birthday we were looking for another software package that would build on his progress and stimulate his interest.  After a quick demo we knew that Look2Learn was the software for Macsen!

Macsen's has 3 favourite activities.  He dips into the others from time to time, but as his CVI improves with familiar objects we use these as our main stable:

Custard Pies

This is a fun activity which starts with a clear screen with a circle containing a familiar face.  When he finds the face a hand comes from off screen and throws a custard pie!  The animation is fun, but most importantly for Macsen the action is comes with a funny splatting sound.  Audial confirmation is very important for Macsen as hearing is his strongest sense.  We are also able to customise the activity, so he is looking for familiar faces, which include Elmo, Mario and finally (and I'm sure most satisfyingly) his big brother!

Reveal Shapes

In this activity Macsen is faced with a screen full of overlapping images.  These range from coloured blocks to hearts and jigsaw pieces, but in every case they are very bright and interesting.  As he looks at a piece of the puzzle it will disappear to reveal part of a familiar picture underneath.  This works well for Macsen and we generally use this as his first activity as the brightness it catches his eye.  We use this activity along with questions to help develop and assess his understanding of the around him.  For example if he reveals a person's nose we will say: "can you find his hair" and we will watch for him to move towards the top of the screen.

Hose

This is Macsen's favourite activity and he is clearly excited every time it comes on.  As soon as we say: "let's wash the car" he bursts into laughter!  In this activity he is in control of a hose pipe and wherever he looks the hose moves.  He loves washing bubbles off the red car, putting out fires and splatting bugs.  He finds others a little more challenging as the contrast is not as clear such as watering the white flowers, but we help him with those ones!

Macsen loves Look2Learn as it's bright, colourful, interactive, age appropriate (not babyish) and most importantly for Macsen has been created with a sense of humour!

I (dad) like Look2Learn as it allows we to customise the activities to suit Macsen, it is easy to navigate and it provides excellent analysis in the form of heat maps that I can use to track his visual development.

I cannot recommend this product enough and when Macsen can 'talk' I'm sure he will say the same!

Update 19/05/2014: here's a video of Macsen using look2learn: http://youtu.be/6hZYCe6TgpA

If you are interested in Look2Learn here's the product site: https://www.sensorysoftware.com/looktolearn.html

Fundraising - Part 2 - How We Did It

This is the second part of my 3 part blog on fundraising.  Part 1 described our situation, how we came to fundraise and the challenges we faced.  I hope this post will be more positive and will give other families an idea of where to start as it describes what we did.

As soon as we decided to start fundraising we were directed to the charity Tree of Hope.  A close friend recommended the charity to us after it helped her family.  The charity offers a number of services to families like ours; details can be found here: http://www.treeofhope.org.uk and an excerpt from their mission statement is:

 

'Our mission is to transform the lives of sick children and empower families.

Tree of Hope offers hope to the families of sick and disabled children in the UK who need specialist medical surgery, treatment, therapy and equipment in order to free them from suffering, giving a better quality to their young lives'

We approached the charity via email regarding fundraising for the eye gaze computer and later for other therapy equipment. Within hours we were connected and Tree of hope quickly helped us to setup a JustGiving page dedicated to Macsen: http://www.justgiving.com/macsen.  The charity assured us that any funds that we raise would be ring fenced for Macsen and would be used to buy his equipment when we need it.  

As all funds are managed by the charity including payments it gives donors and fundraisers the confidence that their money is being spent correctly.  The team at the charity are always helpful, supportive and have helped us throughout our journey.  Working with the charity also brought us other benefits:

* VAT exception - the charity have VAT exemption on most items

* Gift aid - donations can increase by 25% with giftaid using sites like JustGiving and VirginMoneyGiving 

* Opportunities - working with a registered charity opens up extra fundraising opportunities.  Large organisations normally require a charity number and like the safety of the overseeing charity commission 

* Experience and support - the charity has lots of experience of dealing with selling organisations and in some cases could influence discounts

Our amazing friends and family supported by Tree of Hope took the opportunity to help us and ran with it.  Without them we would not have achieved anywhere near what we have over the last 12 months!  Here are an example of some of the fundraising activities that were organised for Macsen:

* Kids fun day - our friend Hayley Beddows booked a community centre for a few hours during the school holidays, organised a tuck shop and raffle. A local company Sandcastle Entertainment also offered a free bouncy castle and entertainment. 

* School disco - our friend Jo Barrow organised a school disco after school one evening.  They charged for entry and the tuck shop.

* Macsen Rocks (Band and Auction Night) - 2 local bands: On Like Kong and The Shuffle played at our local rugby club where we auctioned a number of rare collectors items (https://www.facebook.com/events/246154305521200)

* Craft fair - 10 local crafters came together and paid for tables at our craft fair.  It was based in a community centre in Mumbles where there was very high tourist footfall (https://www.facebook.com/events/412983975483065). 

* Curry night - our friend Natalie Mccombe organised an event at a local Indian restaurant where everyone paid a fixed sum and a proportion went to the charity (https://www.facebook.com/events/197237677101409).

* ASDA - we were selected as one of ASDA's community supported charities along with another Tree of Hope child.  We were included in the green token vote and shared 3 months worth of 5p carrier bag charges for a large superstore.

* Pub Fundraiser - A local group led by my cousin Corinne organised a charity night at local pub. They had singers, donations for dares and a raffle.
* 3 Peaks - Gene Morgan did a crazy 3 peach challenge to raise funds for Macsen

* Fighting for Macsen - My brother in law David Smith took part in a white collar boxing match and was sponsored by his friends and colleagues.

* Community Bike Ride - A local group came together for a mammoth cycle ride.  We hadn't met any of the riders before and even when they tragically lost a member of their team (Paul 'Jakey' Driscoll) they were very committed to helping our cause (http://pauljakeydriscoll.co.uk/).

We also have some ongoing fundraising activities:

* The Killay Cooperative supermarket has a collection tin on each of its checkouts for the remainder or the year.

* Our friends Jo and Marc Barrow are running the Barcelona marathon in support of Macsen (www.virginmoneygiving.com/joandmarc).

* Our neighbours Warren and Alex Mccombe (father and son) are planning a huge bike ride on Father's Day in support of Macsen (https://www.justgiving.com/Warrenmccombe/).

My wife Lisa and I would like to take this opportunity to thank everyone who has helped us through this time, whether it be fundraising, donating or any way else, you are amazing!  My next post will show what your donations have bought and how they are benefitting Macsen.

Fundraising - Part 1 - Is It Begging?

For the last 12 months our have been fundraising for our son.  When we started we were very uncomfortable and it definitely felt like begging!  On reflection it still feels uncomfortable, but it feels great to see what our community has achieved and how my son Macsen is benefitting from it.  Throughout we have been split between our pride and helping our son.  This is the first part of a 3 part blog, which will cover our feelings towards fundraising, what we did and finally what we achieved.

I must start with a recommendation for anyone who needs help to look into charities, councils and the NHS (here is a good list to start with: http://www.smartboxat.com/funding/).  Each of these are setup to help families to fund specific items.  This works for lots of families every year, but budgets are often tight so they cannot help everyone and decisions are often made using means testing with very low thresholds.  Although this is understandable it unfortunately leaves a lot of families without essential financial support.

We found ourselves in this situation.  I'm not going to claim that we are poor or on the breadline.  My wife and I both had well paid jobs before Macsen was born and like many other professionals in their twenties we bought a house at the top of our budget that was dependant on 2 salaries.  As Macsen's conditions developed it became clear that my wife wouldn't be able to return to work.  This left us in the position where our income was reduced by over a third.  Our income is still considered good, but our little disposable income disappeared at the time we needed it most.

We were in the position where we were identifying equipment and products that would help our son's development, but we quickly learnt that the special label comes with a large price tag.  Here are some examples of comparable standard and special needs products, it's pretty obvious that essential items for someone with a disability are extremely expensive.

The first product that we knew we needed to get was a Tobii EyeGaze computer (please see my last blog for details).  We knew we had to buy a system for Macsen, we had tightening budgets and we realised that we were not suitable for charitable grants.  As professionals we never thought we would be in this position, but we reluctantly decided to fundraise ourselves.

Over the last 12 months we have fundraised a computer and therapy room.  Help came from many directions:

* Our amazing friends and family who had been looking for a way to help us.  As soon as we announced (Facebook message) that we were fundraising we had donations and offers to help within minutes.  Our friends and family have all said were grateful for an opportunity to help!

* Companies want to help children like Macsen - most companies we approached offered prizes or donations instantly and were happy to help.  They have money set aside to help charities and many allow their local stores/offices to donate to local causes.  The message we kept hearing was that they were pleased to know exactly where their money was going.

* People we didn't know who were looking for causes to help - as the message of our fundraising spread we were contacted by many people (friends of friends who we had never met) who were offering their time, money and support.

Accepting all of this support was very difficult and overwhelming at times.  On reflection it is clear that we made the right decision.  Macsen has benefited from all of the things that the community bought and without them he wouldn't be where he is today and would not have the opportunities that are now ahead of him.

If you are in the position we were in a year ago I urge you to consider fundraising.  Please swallow your pride (I know it's easier said than done) and ask for help!

My next blog will describe how we worked with a fundraising charity, what benefits this brought and the events were organised.

The start of Macsen's journey with EyeGaze

Macsen Williams is a complex and amazing little boy.  We always felt that Macsen understood what was going on, but his multiple problems stopped him from showing it.  He has evolving 4 limb cerebral palsy, epilepsy and Cortical Visual Impairment (CVI).  

 

We have been very lucky to work with lots of specialists who agreed with us about his potential.  As an IT professional and keen technologist I was looking into what tech can help.  When he was around 18 months old I bought Macsen some switches and iPad apps. I was very excited about how they could help; unfortunately I couldn't get Macsen to engage with them at all... Macsen finds it hard to focus on more than once sense at a time.  If he is feeling or touching he will look away.  When he's looking his arms will go stiff. When he's listening he has no interest in anything else...

While at Bobath (a specialist therapy centre which helps young people with cerebral palsy) I mentioned the technology that we tried.  An amazing speech therapist (Niki) was very tactful, but delivered the news that switch interaction would be difficult for Macsen.  She knew that Macsen would struggle with the connection between pressing a button and seeing the result on screen, especially as he would be looking the other way :).  

Niki asked us whether we had heard of EyeGaze technology and she told us to google Tobii.  As soon as I got home I looked it up.  I was very impressed, but I dismissed it as Macsen had recently been registered blind (severe visual impairment).  We were working with a Visual Impairment teacher who had taught us how to gradually build up his visual skills.  We introduced shapes and colours gradually, naming objects and announcing when he should look.  He was showing progress, but our long term expectations were low.

Thankfully Bobath and Niki continued to investigate eye gaze tech and when Macsen was 18 months old they invited us to a trial with Tobii.  Here is a video from the trial (link):

The 5th of February was one of the most emotional days of our lives.  It was the first day that Macsen was able to demonstrate his intelligence.  When we were 10 minutes in Macsen had tried a few activities, but had only glanced at the objects a few times.  The facilitator (Hector Minto, UK Sales Manager) turned to the group and described how the technology worked.  All our attention was focused on Hector and the Tobii was left showing a green field with 10 or so targets on it.  While Hector spoke we heard an arrow hitting a target... Then another... Then suddenly all the targets fell and Macsen bust into laughter!  I cannot explain how we felt... He was playing on his own!  You could compare the feeling to when a child says their first word, or walks for the first time, but I'm sorry, they don't come close.  Developmental milestones build up over a weeks and months, but to go from nothing to personally led play within 20 minutes... It doesn't get bigger than that!

During the trial Macsen worked through lots of activities with highlights including drawing his first picture, popping bubble wrap and matching pairs of playing cards.  At the end of the session we had so many emotions.  We were proud of what Macsen had achieved, excited about Macsen's future, but strangely guilty that we hadn't unlocked this ability sooner.

The next 6 months were a whirlwind.  Our amazing friends, family and community got together to raise finds to buy Macsen his very own system.  Since receiving his system Macsen has had really great sessions where he's had lots of fun.  Here he is playing drums at 2 years old (link):

We also believe it has helped to improve his vision.  We have noticed that when using the system is able to focus for longer periods; he is also able to find specific items on request like animals on a farmyard.  We know that with CVI a child will develop by looking at consistent images/objects and his games have demonstrated this!

Eye gaze technology has created so many opportunities for Macsen's future.  We expect that it will help to develop his vision, give him opportunities to play and we hope that it will eventually give him a voice.

The next part of the journey was not always so easy, but we'll cover that in a future blog post: "How we overcame our EyeGaze challenges"...

Lights in Your Eyes

In the last post we covered how to set your eye control or touch computer to control a toy or bubble machine; this was all about giving restricted child the ability to control small things around them.  What if we took this to the next level?  What if they could turn the lights on and off?  Or dim them?  Or brighten them?  Or even change their colour?  Well that's exactly what we are going to cover in this post.

In Macsen's therapy room we setup special wifi lightbulbs that change colour.  They are especially effective in his room as we have a set of 6 and have painted the cellin and walls completely white.  Here's some pictures of the effect:

The lights can be controlled by the out of the box remote control, iPhone/android app or the Tobii Communicator pageset that I created.

To set this up,yourself you will need:

* A set of Easybulbs and a Wifi controller.  You can buy a set of 4 with a wifi controller and remote for £77: http://www.easybulb.com/4-easybulb-rgbw-6w-led-light-bulb-remote-control/ (in some countries they are known as MILight or Limitless LED)

* An eye gaze or touch screen windows system (we use Tobii PCeye go http://sensoryguru.com/products/pceyego/)

* A copy of Tobii Communicator

* Access to the settings of your wifi router

* My pageset from pageset central (http://www.pagesetcentral.com/home?task=view.download&cid=1030)

What do do:

* Setup the lightbulbs to use the remote using the in box instructions and test

* Configure the Wifi controller using this web page: http://www.easybulb.com/support/ and test with your smartphone or tablet

* Log into your wifi router settings, find the wifi controller (named Link_Wi-Fi), change it's IPAddress to static/reserved and note the IP address (detailed steps are included for Sky routers at the end or the post)


* Install .net framework 4.5 (http://www.microsoft.com/en-gb/download/details.aspx?id=30653)
* Unzip the files downloaded from pageset central (http://www.pagesetcentral.com/home?task=view.download&cid=1030)
* Copy the EasyBulbControl.exe and EasyBulbControl.exe.config files for the unzipped folder into the C:\Program Files\EasyBulbControl folder
* Open the EasyBulbControl.exe.config file in notepad and set the following values:
      * Set the IP Address to the one you noted above for Link_Wi-Fi
      * BulbType will either be RGBW or RGB depending on the type of bulb you bought
* Copy Colour Wheel.cdd into your standard pageset folder


* To test the app works, run the following program C:\Program Files\EasyBulbControl\EasyBulbControl.exe.  From this form you should be able to turn the lights on and off as well as changing the colour.


If that worked, open your new pageset and you should now be able to control the bulbs and change your environment with your eyes!




Example steps to fix an IP Address


These steps will be slightly different for each type of router and broadband supplier.  Below are the steps for a sky router:


Open a browser and connect to your router.  For sky it's generally http://192.168.0.1

 
Navigate to the attached devices page.  If prompted for a username and password, set:
    Username: admin
    Password: sky

Find the item Link_Wi-Fi, note the IP Address and MAC Address.


Navigate to the LAN IP Setup page and add and Address Reservation for Link_Wi-Fi with the IP and MAC address you noted.

 
The WIFI controller may need to be turned off and on again after this change.