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/)

I’m fine

 

I’m fine. Or at least that’s what my photographs from the last eight weeks show.

Photo of a frog stuck in a plant pot

In reality I’m not fine. I’m processing a major event along with the rest of the world. It’s hard to admit that life is difficult when you know that it’s tough for everyone. Everyone has circumstances that make this situation difficult whether it’s isolating alone or as a working parent; losing a job or doing a job that’s particularly demanding. Everyone is doing what they can and hopefully communities are rising to the challenge of supporting each other just as ours has.

For us the shutters came down around our family of four a week earlier than lockdown. My instinct was to protect Quinns as I felt he was particularly vulnerable. I questioned myself constantly for several weeks before we finally received his shielding letter. The letter brought a certain amount of relief. Knowing that my instinct was right and that professionals agree is comforting. It doesn’t however bring back the support that we are missing.

We’ve gone from a team that couldn’t fit in the school’s biggest meeting room to just the three of us looking after all of Quinns’ needs while Dad works full time at a stressful job from home and Big Sister is home schooled.

There’s no longer the same NHS input as those who support us have been redeployed to cover other areas. On a practical level I have been unable to get the bigger size in Quinns’ support shoes from orthotics and have no hope for the next few months.

At the beginning of lockdown Dad had to fix the headrest on Quinns’ chair while receiving instructions on the phone from the rep. Later that day the rep was furloughed. For a while now a bit of the chair falls off periodically. We simply stick it back in.

Quinns’ three Nursery days a week provided not only education and socialisation for him but also space for me. He had the benefit of 1-1 support in the classroom while personal care was provided 2-1. Now it’s me providing it all and my much needed space is non-existent. My one saving grace is his classmate, Big Sister who also covers as my teaching assistant and occasionally additional support for personal care.

We chose to stop the carers who came into our home a couple of times a week to help us out. The risk to us and others was too great and we felt we could manage. However with grandparents all isolating in their own homes there’s absolutely no hope of respite. My only relief is when Dad manages to take holiday from work.

Much as I have wanted to I have not had the time or energy to write. I have however tried my best to keep up with developments. There have been times when I’ve desperately wanted to shout about frailty guidelines, DNR letters and serious changes to legislation. It rang so true when I read recently that it’s difficult to write when you are afraid.

‘We are all safe and well and making the most of our time together’ is my cover story for a level of exhaustion and anxiety that is off the chart.

Knowing that we are shielding at home till at least mid July, the only thing we can do is keep on going. We plan to make the most of the opportunity to ‘home school’ making use of the skills and resources available to us (it will come as no surprise that our home school has it’s own name and brand!)

I can’t take on all the roles of Quinns’ team but I can still be an advocate for value over vulnerability by sharing our positive stories.

And one last thing if you’re needing a break in lockdown and haven’t watched the film Crip Camp yet I’d highly recommend it!

Stay home save lives

Photo of Quinns sitting on Big Sister's knee on a picnic mat with apple tree in the background.

Life is a bit full on for everyone at the moment. Round the clock caring responsibilities without a break as well as home schooling is keeping us busy. We are shielding at home for the next 12 weeks but we are happy, healthy and making the most of our time together.