Look to read

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/)

Can you hear me?

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.