eye gaze computer

Communication Matters

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Big Sister and I had the privilege of spending two days at the Communication Matters Conference earlier this week. Leeds University hosted nearly 500 delegates including 39 AAC (Alternative and Augmentative Communication) users. It was incredible to meet up with friends, people we know working in the field and to meet new people and make new friends.

A bright yellow cloth bag with CM25 in giant letters lies on a wooden table behind the CM2025 Conference Guide and the AAC Awards 2025 guide.

There were so many talks across the two days that it was impossible to see them all. I feel like we only scratched the surface but we would have needed an entire week or possibly more to cover it all. AI was a big theme. Both the possibilities and the pitfalls for AAC were discussed. The talks that left the biggest impression were the ones where AAC users themselves spoke.

I really wish Quinns could have been there to see the other AAC users in action both speaking and generally being around. He is still a bit too young for such a Conference so it will be a few years before we can bring him along and introduce him to this community.

One of the talks at the Conference was from Smartbox about ElevenLabs voice integration. You may have seen the story on the BBC recently about the woman they created a voice for using 8 seconds of scratchy voice recording from a VHS video. Although Quinns isn’t eligible for a voice at the moment we got to talking about it.

He’s come a long way since he changed his voice to the Queen when he first got the device. This was one decision we reversed as he was only three! In the summer we deepened his computer voice slightly in line with his age and will deepen it further as he heads into his teenage years. He has only ever had a computer voice so it’s difficult to imagine what his accent would be but how amazing would it be for him to have his own unique voice.

It’s been a while since I shared any of Quinns’ AAC journey. In the past year he has got a new eye gaze device which is slightly bigger and has improvements such as a partner screen on the back so that communication partners can work opposite him rather than crowd in beside him.

The new device includes TV controls allowing him to scroll through YouTube or put on a film on our main home tv or maybe I should say Quinns’ tv as he’s the one who watches it the most. When we tried to watch a programme while he was playing games on the eye gaze I couldn’t understand why it had stopped until I remembered Quinns now has control! He clearly did not want to watch what we were watching.

He also now has a mount for his wheelchair so he can use the device when he is out and about. He loves being able to show it off to the librarians in our local library! We are still coming to terms with making sure we have all the bits necessary when we leave the house.

Quinns smiles sitting in his wheelchair with his eye gaze device mounted in front of him. There is a Smartbox CM 2025 Conference sticker in one corner and AAC in graffiti letters sticker on the other corner of his device.
Quinns sitting in his wheelchair with his eye gaze device mounted in front of him. He is focusing on the eye gaze. There is a Smartbox CM 2025 Conference sticker in one corner and AAC in graffiti letters sticker on the other corner of his device.

Following input from CALL Scotland last year he is now much more able to use it for his school work including filling out maths sheets. Apparently he really enjoys learning his times tables! At home he is obsessed with art. Despite our attempts to have him on a communication grid to talk to us he prefers to navigate to his school board, say ‘Au revoir’ and escape to the grid where he can open his art programme. It’s all communication, right?

The photo is taken over Quinns shoulder. He is sitting in his wheelchair looking at the screen of his eye gaze which shows a bright yellow and blue artwork.

We have returned from the conference with lots to reflect on as well as ideas to help integrate Quinns’ eye gaze device into our lives more and give him more opportunities to use it and communicate beyond our family. Although it may be a while before we can take him to the conference maybe there will be a meet up of young AAC users in Scotland soon!

National Cinema Day

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We’ve not managed to get away this summer. Our long awaited WAV (wheelchair accessible vehicle) arrived the day before the schools went back. It has been a real struggle fitting Quinns and his Bug wheelchair in our car and has made days out very difficult if not impossible. The cinema has been our go to as are lucky to live within walking distance of the Macrobert Arts Centre, a creative hub which includes a cinema and a Changing Places toilet.

Quinns has always loved watching tv. It’s the one thing in life he doesn’t need help with. His interest in film began when he was really small. It started with films like Toy Story, Cars and then Planes: Fire and rescue, the film where his favourite song, Thunderstruck by AC/DC comes from. Last year he graduated to watching all the Star Wars films and quizzed everyone on his eye gaze with questions about which lightsaber they would rather own.

This year Marvel has taken over. He’s watched so many I’ve totally lost track. His knowledge on the subject is incredible. He loves to guess which Marvel character from clue cards. It’s a great way for him to show us and anyone who visits what he knows. 

Quinns has a serious face looking at his eye gaze computer which can be seen from the back. A mini screen shows pictures of Marvel characters and a card shows the character Hela.

We know he gets a lot out of watching tv programmes and films. Not only is it brilliant research for his budding film making career but we know he’s safe and happy watching at home. However unless he has persuaded one of us to join him it can be a fairly solitary activity. That is not ideal for our social butterfly so cinema is an obvious activity to get him out and about.

You would think it would be an easy and accessible activity. However a few years ago when I looked to take Quinns and Big Sister to our local major cinema I discovered it was not. The accessible seat was situated (caged in) right at the front of the cinema with only one carer seat next to it. 

My dilemma, do I sit next to Quinns and send Big Sister, then aged 9, off to sit on her own in the body of the cinema or leave the two of them together and find myself far from them both? Even if we go as a family or I take someone with us to sit with Big Sister, we’re split up. Quinns couldn’t go with a group of friends without being separated from them.

Cinema screen layout diagram showing 2 blue wheelchair spaces with one carer seat each right at the front of the cinema separate from all the other seats.

Having designated wheelchair spaces with a carer seat may comply with the regulations but I’m not sure how much input there has been from anyone with lived experience.

The Macrobert Arts Centre is different. In one screen the wheelchair space is on the back row with ample space beside for us all to sit together. In the other screen the entire front row has drop down seats allowing wheelchair users and their families to sit anywhere along the row. 

The downside is we have limited choice of what to watch and we have to wait patiently for films we want to see as there are only two screens compared to the eight of the major cinema. However this is far outweighed by the fact we have access to a Changing Places toilet. 

This is now a necessity for any trip out with Quinns. I was surprised to discover on Changing Places awareness day that only a small fraction of cinemas have one which seems like a missed opportunity.

Cinema really could be a truly accessible activity if only more of them had access to a Changing Places toilet and there was just a little more thought as to the placement of wheelchair spaces. It’s not too much to ask for our budding film star, is it?

Quinns and his Big Sister smile from the dimly lit back row of a cinema.

Speech Bubble drama

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Quinns has been enjoying online drama classes with Speech Bubble drama for a couple of years now. Over the last school term he was supported to produce a short film at the class and in June we attended the premiere of his latest film, Quinns is a Starfighter Pilot. 

Quinns sits in his Gravity armchair smiling up a the camera. His red t-shirt has the Speech Bubble drama logo on it. A framed film poster with the title Quinns is a starfighter pilot leans against the chair.

From Quinns’ suggestions for what he wanted in his film we then worked on the story. Once complete Big Sister drew out a storyboard. We then programmed it into the eye gaze so that Quinns could explain the sequence of events.

After enjoying the results of last year’s film, Quinns, trains, automobiles…and rockets? We went all out this year on the production value with the addition of make up, costumes and special effects.  We had fun filming both at home and on location. It was a brilliant distraction after Quinns had been so poorly. 

The premiere was a fabulous celebration of the work produced by all the participants of the classes. Like last year’s, the films were all shown on the big screen for the creators, stars and family members before awards were given out for each film. This year there was the addition of a panel which allowed the participants in the classes to answer questions about their films.

We knew the questions in advance so after asking Quinns to answer we were able to work out more substantial responses to say at the event. He had an opportunity to practice before the event. On the day he was delighted to tell everyone about his problems with the wings falling off the Space Bug when we were filming and how he was inspired to make his film by Star Wars and the Millenium Falcon. I was so proud of how keen he was to use his eye gaze to answer in front of such a large audience.

He seemed to really enjoy being in the limelight and I think you’ll agree he makes a brilliant leading actor. You can enjoy watching both Quinns’ films on the Speech Bubble drama YouTube Channel along with a range of films from other participants.

Quinns is a Starfighter Pilot 

Quinns, trains, automobiles…and rockets?

Look to read

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Photo of a eye gaze computer grid screen with the words 'Quinns be wanting train' selected

Life can be hard at times but I’ve learned the importance of finding rainbows. One of the major positives of being in lockdown has to be the improvement in Quinns’ use of the eye gaze.

Quinns has had his eye gaze computer for communication for over a year now.  I had been transporting it between nursery and home for a few months before lockdown started. Now the eye gaze is set up on our dining table at all times, as opposed to being left in a bag after carrying it home from nursery, and the four of us have been sitting down for meals together three times a day. With no demands on any of us to be anywhere else Quinns has had lots of time to practice selecting the words/pictures and we’ve had the time to listen to him.

Like any child Quinns started out babbling only he used the eye gaze. He would choose words and then repeat them over and over. Every new page or board is a whole new set of vocabulary for him to explore. It was tedious but also very necessary.

Now he’s reached a point where he picks out relevant words from our conversations. When we talk to Big Sister about the tiger in her school work he pipes up with ‘tiger’. His level of understanding is such that when Dad and I were having a fairly in depth discussion about going to hospital with Covid 19, Quinns chipped in with ‘hospital’ and  ‘ambulance’.

He’s showing us that he’s following everything we say. Of course that also means he’s got good at demanding. When he’s finished his main course he always asks for ‘pudding’ and constantly says ‘drink’.

We know him so well we know what he means with just one word but we must encourage him to build his words into sentences. He has shown us he can do it especially when he wants something; ‘Quinns be wanting train’ and ‘Train now Dad’ are a couple of ways he’s expressed his desire to go to the train station. Now he can’t go out and see the trains, train has been replaced with PlayStation, YouTube or tablet.

He has the option of some ready made phrases including a range of jokes. The first part of the joke is one button and the punch line another. The jokes themselves aren’t necessarily funny but him saying ‘that’s so funny!’ after every joke always makes us laugh.

During lockdown we’ve stayed connected with family and friends via Zoom. Dad is a bit of a tech whizz and early on worked out how to share Quinns’ eye gaze screen and sound while on calls. This means Quinns has been able to talk directly to people using the eye gaze. It’s lovely to see both his screen and his face at the same time as usually we are sitting beside or behind him.

The absolute best bit of the eye gaze though has been getting a programme called Look to Read. When Quinns scans the words with his eyes it reads them out. He reads entire books this way. The freedom it allows, both him and me, is incredible.

Recently during a chat with his friends the only thing Quinns wanted to do was read. Of course I made it happen for him by sharing his Look to read screen. It was amazing to watch his friends faces as they listened intently to Quinns reading them all a story.

With a little bit of camera trickery by Dad we took this video – tiny.cc/BuzzBug – of Quinns reading to share more widely with friends. You can see the screen he’s reading from on the left and Quinns face on the right as he reads.

Massive thanks go to the amazing person who organised Look to read for us (and for everything else she does for us!) and also to Smartbox for making all this possible.

For Susan, the girl in the rainbow dress (https://www.facebook.com/teamhamish/)

Swimming facilities

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Would you be willing to parade in public in your swimming costume? I am discovering a level of body confidence that I never knew I had because I am no longer willing to cover up and pretend that what is being provided is ok. I am no longer willing to make it work but I do want to make swimming happen for Quinns. So far that’s involved walking through a busy public area in our local leisure centre dressed only in my swimming costume.

Close up photo of Quinns eye gaze with the words 'They went to the swimming I want to go to the swimming'

Scottish Swimming recently released a video to launch their inclusion campaign #SeeMyAbility. I totally agree with the message “Don’t separate, segregate or keep me apart…make inclusion, integration and togetherness our task”. I also fully agree with their tagline ‘Everyone can swim’ but from my experience of finding pools with suitable changing facilities for Quinns I’m not so sure that the practicalities have even been considered. 

We are working up to a family visit to the home of Scottish Swimming (where there is currently a £20 million redevelopment underway). Why are we having to work up to it? The Changing Place, that we have been told is the provision for the sports centre, isn’t even in the same building as the swimming pool. In fact it’s not even in the sports centre building next door. 

It is situated in an arts centre that is a 5 minute walk away from the pool building. The walk currently takes you past a building site and down a hill on a busy University campus.

Here’s hoping my new found body confidence in order to make swimming happen for Quinns will allow me to enjoy the feel of the breeze as I stride it out on my way to the pool! 

Can you hear me?

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I was recently on a course where speakers would present on various topics relating to inclusion. 

Pencil line illustration of a young boy shouting into a microphone.

At the start of one presentation a support person held the microphone to the speaker’s mouth. ‘Can you hear me?’ said the speaker. As we shook our heads the supporter adjusted the microphone. ‘Can you hear me?’ 

Again the answer was no and more adjustments made. ‘Can you hear me?’ This went on for several minutes until finally we could hear the speaker and I can assure you by the time the presentation began we were all listening. 

After that for the duration of the talk the supporter quietly held the microphone to the speakers mouth, only switching arms as required. His job simply to help amplify the speaker’s words.

Knowing how to support someone who is physically disabled can be really difficult. A really fine balance needs to be struck between supporting someone to do something and simply doing it for them. 

I recently helped Quinns make salt dough ornaments. They looked pretty good but my own experience working with dough and icing was obvious. I had taken over. I overstepped the mark of enabling and instead made them for him. I like to think that’s what any mother would do though… 

One evening we were sitting at the table. Quinns had his eye gaze computer in front of him. Big Sister was writing a letter. She finished and passed it to me. I read it to myself and told her how great it was before putting it down beside me. 

Quinns very slowly but carefully picked three words. ‘I. Want. See.’ 

Close up photo of the screen of Quinns' eye gaze computer showing the word and images for I want see in the speech box.

Of course, I had forgotten to show him the letter his sister had been working on. A great reminder that he’s so often passed over. We share things and show each other things all the time. His presence in the room isn’t enough to include him. He needs help to get in on the action either by someone moving him closer and / or helping him with the relevant piece of equipment but at the same time not overstepping the mark. 

Quinns will probably always need help. There are some amazing designs and technologies available that will enable him to do a whole lot but it’s really important that he also gets the right support person. The one who will quietly hold the microphone and allow Quinns’ voice to be heard.

Quinns’ Voice

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Photo of some of Quinns' t-shirtsWe spent ages choosing a voice for Quinns when we set up his eye gaze computer. It’s always been very important to me that Quinns’ voice is appropriate.

He uses a switch (basically a big button he can press) which we can record messages onto. Rather than do it myself I get Big Sister to record his news on it for nursery and they get the other children to record ‘here’ for him to say for the register.

At the very start of the CBBC documentary, Locked In Boy, about Jonathan Bryan you see Jonathan choose one of his friends to be his voice. (I’d really recommend you watch if you haven’t already). It’s all his own words he just needs someone to speak them.

For Quinns we didn’t think the default English computer accent was appropriate. I briefly considered an Australian or Canadian accent but really it came down to the little boy with the English accent or the Scottish man. After much deliberation we chose Stuart the Scot. He sounded soft and less…computer-y and it seemed to suit Quinns.

First thing Quinns did when he got onto the eye gaze? Changed his voice to The Queen! Yet another reminder that he’s the one in charge.