Bobath - More than just eyegaze

It's been almost a year since our family had the pleasure of being part of children in need 2014.  Macsen's story was one of the 3 minute tearjerking videos that encourages you to donate.  If you haven't had a chance to see it or you need a good cry take a look :

When we were asked to take part we instantly said yes, not just because it's Children in Need, but because we wanted to represent Bobath Wales and let the world know what amazing things they do everyday!

Bobath Wales (officially Bobath Children's Therapy Centre Wales) is a charitable organisation that helps children with Cerebral Palsy.  The team is a collection of consultant level Physiotherapists, Occupational Therapists and Speech and Language Therapists.  Every single specialist who has worked with Macsen is exceptionally knowledgeable, passionate and generally lovely.  Actually that goes for the whole team, after our first visit every singe therapist, marketing person and member of the office knew Macsen and every member of our family by name.

I would describe Bobath Wales as a problem solving service.  They get to know the child and family and plan a programme and build a team around the child's needs at that time.  For us this has been mainly therapy blocks of ~ 10 sessions over 4 weeks.  We've had blocks focusing on feeding, breathing, body shape, hip spasms, pain and as you've seen communication and eyegaze.  Here are some examples of how the team have helped us :

Breathing

This video shows how Macsen's breathing was before we visited Bobath.  We had previously met many consultant doctors including an ENT surgeon who performed keyhole investigations.  We were told that nothing could be done to help and we just have to wait and hope it improve improves...

During the first day of our first visit to Bobath Wales they identified that Macsen was not using his diaphragm correctly.  They showed us how to support him to encourage him to engage his diaphragm.  We did this for 20 minutes 3 times a day and within 3 days his breathing changed, his ribcage pulled in and his whole body shape changed!

Feeding 

Also during our first block we learned how to safely feed Macsen orally.  He had recently started NG feeding, but during the block we were able to prove his swallow was safe and move away from tube feeding.  We were introduced to a special toothpaste that doesn't produce foam.  This was revolutionary for Macsen as he struggles to cope with increased saliva and during tooth brushing he was at serious risk of lung aspiration.

Strength / tone / body shape

Physiotherapy is at the centre of everything that Bobath has done for Macsen.  He is very complex due to his stiff limbs and floppy torso.  Every time a Bobath therapist handles Macsen we are amazed what they can achieve.  With their support he has strengthened his neck, loosened his limbs and has improved his ability and confidence in holding his head.

Throughout the last 12 months Macsen has had awful problems with pain.  The pain was so bad that it was hard to straighten him and he just wanted to be rolled in a ball.  This left him with a curved back, S shaped spine and shortened leg muscles (unable to straighten).  The team have done an amazing job in starting to reverse this and have trained us in how to keep going.  We hope this will minimise or negate the need for operations in the coming years.

Pain and Spasms 

During two of Macsen's blocks we were unable to work on the developmental areas we had hoped due to his increasing pain and muscle spasms.  The team identified this and worked on identifying the root cause of the pain and teaching us how to reduce the impact.

Advice / Training and contacts

The one thing that has always amazed me is the openness of the whole team to learn.  Although every therapist has a specialism they have all developed the highest level of skill in each other's discipline.  They also welcome specialists from other organisations and other Bobath centres; we have been part of such training sessions and every single person, no matter what rank or level of experience is open to someone else's perspective and experience.

The team also ensure they have keep contact with each child's local NHS team.  They produce very detailed programmes to ensure that the child has continuity of care and that the benefit continues well beyond the block.

We also experienced the benefit of their extensive specialist network when Macsen had a very unique digestive problem.  We were making slow progress, he was experiencing alot of pain and we were constantly being told there was noone who could help us privately.  Within a day of asking Bobath for support they reached out to their network and a number of specialists recommended a consultant in London who was able to identify, advise and operate on the problem within weeks.

Support 

We have also had lots of emotions support from Bobath's Family Support Worker who is a CP mum herself!  We've also been to lots of fun and useful events including ice-skating, meeting assembly ministers and meeting Santa.

It's hard to believe that Bobath has helped our family in so many ways in Macsen's short lifetime.  Every child that has cerebral palsy is so very different and Bobath Wales adapts to support their specific needs.  Hopefully you can see from Macsen's story and Bobath is very much more than just eyegaze! 

Please make a difference to families like ours and make a small donation to Bobath Wales :

https://www.justgiving.com/bobathwales

Making the iPad Bashable

iPads have become must have equipment for every school class, every physiotherapist and disabled child at home.  It's also amazing to see how many apps are on the app store designes specifically for our kids!  What's really cool is seeing how standard (and cheap) apps can be enjoyed by our kids.  Have you ever played with a standard app and thought: "this would be perfect for my child" but when you try it out you have problems?  They hit adverts by accident, open settings menus, 3 finger swipe into your emails or keep hitting the home button?  Hopefully I can help.  There's a hidden but very powerful feature on the iPad called 'Guided Access' which is exactly what you need.

I'm going to walk you through how to setup guided access for the amazing garage band app from Apple (link).  Here's our favourate instrument: the electrical guitar:

With this instrument you can play 48 different key sounds by moving your fingers across the screen.  You can make a really cool tune very easily.  The only problem is the top half of the screen is full of menu options!  So let's get on with turning those off.

Enabling Guided Access 

The first thing we need to do is to enable 'Guided Access'.  This can be found in the General/Accessibility section of the settings:

To enable 'Guided Access' you need to switch on the top and bottom options (if you don't have a passcode on your iPad then it may prompt you to set one up).

Using Guided Access 

Turning on Guided Access is really easy.  You just hit the home button 3 times really quickly (in an app, not the home menu).  This will turn on 'Guided Access' with the default settings:

- sleep button disabled 

- home button disabled 

- multitouch features disabled

Already it's solved half our problems, but there's more!  Hit the home button again 3 times and you will see the 'Guided Access' advanced options:

From within here you can decide if you want the Home button, volume buttons and switches (classified as keyboard) to work while 'Guided Access' is turned on.  You could also turn off touch if you want to show a video without screen touches interfering.  The final feature is my favourate.  

You can setup block zones for areas that should not be clicked.  These can be adverts or in my example the settings on the top half of the screen.  To do this you draw either a box or circle around the area you want to block and then resize the shaded box to cover the area.  

When you're done click Resume in the top right hand corner.

Now you're free to bash the screen as much as you like!

Ending Guided Access

To turn off 'Guided Access' and get back to your normal iPad simply click the home button 3 times and chose End.

Here's a quick video is my boy enjoying playing the guitar thanks to 'Guided Access':

Drop Proof

I'd also recommend making your iPad drop Proof.  These are the covers we use which are both brilliant!

Mini - http://pages.ebay.com/link/?nav=item.view&alt=web&id=221655447926

Standard (not air) - http://blossomforchildren.co.uk/at-home/88-tabtoob-tabstrap.html

"If only I could see what he's seeing"

This week Macsen and I took a big leap!  We started the transition from games to communication!!!  We've been playing EyeFX and LookToLearn games to death for the last year.  These have been awesome, but our goal has always been to transition to Communicator, so we can get Macsen Talking!

I discussed this with lots of people in recent months and everyone's advice was the same: MAKE IT FUN!  It was obvious where best to start for Macsen: a soundboard of his favourite movie: The Muppets.  

I quickly created a page in Communicator with clear images and short clips from the movie that Macsen would recognise.  When we tried it I was happy; Macsen hit all the buttons, was smiling, but I couldn't be sure whether the actions were conscious or accidental... Luckily I'd started the Gaze Viewer recording before we started!  This blog will show you the video and what I quickly learnt about what Macsen had done!

Here's the video (link):

I noted 5 clear stages:  

1. To start Macsen wasn't very interested and wouldn't event look at the screen... Until I said I was going to choose my favourite!

2. He instantly engaged with the screen (I'm sure to beat me to it).  He was making selections, but the pattern seemed random.  I think he was excited to be hearing the muppets talk, but his actions were not intentional at this point.  That is until he found Animal!

3. Animal sparked interest..  Animal is different to the other 3; he doesn't just talk, he plays part of a tune...  Macsen fel across Animal 2 or 3 times and was clearly excited... If I'm honest, so was I!  I started to tap his tray, which Macsen really responded to... Macsen started bang the tray and kept his gaze for a long time (plays the tune on loop).  You can see this below with the long line of red blobs and the two clear eye dots in the viewer!

4. From this point on his accuracy improved.  He was really looking at the characters with excellent accuracy!

5. He got tired and bored and wanted to go back to his games :).

I am so glad that I turned on the gaze viewer.  It has given me such an insite into how Macsen is using the system and how he is developing.  Without this I would have still been happy to see him engaging, but would have had a nagging doubt...  I now know what he's seeing!

Look to Learn - Scenes and Sounds - Eyegaze, Touch and Assisted Scanning

It's no secret that Macsen and I love Look to Learn (Look 2 Learn Macsen's Review), so when we heard about the Scenes and Sounds update we were excited.  

The update is great, it continues with the same level of quality and charm of the original while expansing into three new areas:

 

These three categories have 8 or 9 new activities each totalling 26 new things to try.  Scenes contains different cause and affect pictures where actions are triggered from a screen dwell, these range from a moonscape with aliens to the Wild West with a dancing cactus and gun touting sheriff.  The Skills section has more advanced games where you can paint, race a car and throw snow balls.  The most exciting area for us was the Sounds section.

Macsen responds really well to music and sounds, so it's no surprise we spent most of our time here.  Interestingly when we first tried the games we had problems getting Macsen to use the eye control due to insufficient lighting and poor screen angle.  This led us to trying the activities in different ways, which worked really well!  

Touch Interaction

While I was fiddling with the angle and lighting Macsen was really trying to look.  In his frustration he started to reach for the screen.  He never reaches out, so I took the opportunity, disconnected the tablet and encouraged him to touch the screen.  Together we had great fun with the Xylophone and Drum Kit games.

Macsen was able to swipe his arm across the screen and activate the Digital Xylphone.  It was lovely to see and we were able to make some great noise!

We then went onto the drums where he was able to play different pitched drum noises by reaching and hitting the screen.  There are also two special buttons that he hit a few times (lightening) that would play an arrangement, hitting these was a great surprise!

Assisted Scanning

We then tried Assisted Scanning.  An approach I've only just learnt from a presentation from an amazing lady named Susan Norwell.  We used this first with the Rock Band Game.  I asked him if he wanted to choose the drums... He looked straight at my face (our que for yes)... So I clicked the drummer for Macsen.  This kicked off a drumb solo.

I then asked if he wanted the piano... He looked away (our que for no)... I then asked if he wanted the guitar... He looked straight at me!  So the guitarist joined in.  I asked about the bassist and he looked at me, then the same with the piano.  Once all selected the band played a cool rockish tune.  We did this a number of times where I offered the questions in different order.  Each time he choose the drummer and guitarist first showing this boy knows what he likes!

We then continued with the assisted scanning where we tried the Monkey Business activity.  In there a sound is played and you must choose what object is making the noise.  Macsen knew the difference between a police car and horse, bell and cow, baby and car; the only one that caught him out was the difference between a doorbell and lightening.  I was very please and if I'm honest a little surprised...

EyeGaze

Although these other accessible methods were fun and provided variety, but the next day we used the app using our normal Eye Gaze method.  It was also fun and as natural as the original.  

In summary, if you liked the original LookToLearn you will love this add on.  Also next time you play on the eye gaze why don't you try another Accessability method?  You may be surprised with the results!

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