Kissing The Screen

speed cameraSo last week Dylan had Facetime scheduled on his programme on Tuesday and Thursday after his evening meal.  The icon looked like one of those warning signs for road traffic cameras I thought to myself.  I doubted I would be up to speed: I wasn’t even sure I’d created the accounts correctly. If something unexpected happened would I be able to sort it, I wondered?  Or would techno-anxiety get the better of me?

Even though the Facetime symbol didn’t mean anything to Dylan I was conscious that if it didn’t work he might be upset at not completing an activity that was on his programme. It was also likely that Dylan would be less than interested if we attempted to re-schedule (in the future) an activity that hadn’t impressed him the first time. No pressure then. It was with some nervousness I tapped the Facetime icon for the first time last Tuesday evening…

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Proloquo2go (assistiveware.com)

I had spent the previous Sunday restoring both ipads (Dylan’s old one and the new ipad mini) to their factory settings. I had decided that I wasn’t happy with Dylan’s favourite films being ‘in the cloud’ on the mini as he needs to access them without an internet connection (when travelling for example). I was also uncomfortable with the way the ipads were linked, allowing my personal data to be accessed (hypothetically) by Dylan’s support staff.

In the process of setting the ipads free of each other  Ariel’s Beginnings disappeared and some photographs were lost. Other than that, however, the restore was a success and I was able to load Dylan’s resources onto the mini. This clearing of the digital decks also encouraged me to think about how Dylan might use his new ipad in the future. I’ve been wanting to get Dylan a copy of the well-regarded communication software Proloquo2go for a while and, with my newfound confidence, last weekend felt as good a time as any. On a roll, I also subscribed Dylan to Disney Life, an app which allows him to watch any movie he wants as well as offering access to songs, books and games. While Dylan will only be able to use this with an internet connection it is potentially a good use of his pocket money, providing Dylan with on- as well as off-line access to new and familiar resources.

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WP_20160517_006As Dylan didn’t understand what the Facetime symbol on his programme meant he didn’t have the fear I had but nor did he know what to expect. For our first session Dylan was in the corridor outside his room as if unsure where to locate this new activity on his mental map.  I wasn’t surprised – even with some awareness of what would happen I’d wondered where in the house to sit for our Facetime call.

Dylan was clutching his ears and moaning softly, something he does when encountering experiences for which he has no coordinates. I decided to wander around the house, hoping this would help Dylan see we were in real time.  Look Dylan, it’s raining in the garden.  This is what I’m going to cook tonight. The day bed arrived today – let me show you – here I am, walking up the stairs.  As I moved around the house, visiting various rooms, I could see Dylan peeking at the camera from time to time. When I got to the attic (where Dylan watches his old VHS videos when he comes to stay) he lifted his head and looked straight at me.  Good:  I had caught his interest 🙂

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facetimeiconDylan finds the telephone distressing and computer activities can make him anxious if they involve audio. I knew, therefore, that I had to stay open to the possibility that Facetime might not work for him. Although Dylan’s glances at the camera during the first session were encouraging it was hard to know if he was comfortable; Dylan needs time to process new experiences and I didn’t want to make assumptions. Perhaps, I suggested to the staff supporting Dylan, I could have a conversation with them while Dylan watched?

This proved really useful as through it I discovered that Facetime is a great way to chat to staff even if Dylan doesn’t join in. I found it far richer than my daily telephone calls as I had so much more context information and therefore a better understanding of how Dylan was.  While I chatted to a member of staff, for example, I could hear Dylan in the background. Because I know Dylan’s vocalisations so well this gave me valuable information about how he was feeling and when to finish the call. Dylan kept drifting in and out of view, drawn by my voice and image, so as well as hearing him I was visually reassured that he was appropriately dressed and (apart from the ear clutching) at ease physically. This information was so much more powerful than any phone call.

When I waved goodbye to Dylan and tapped the icon closed I felt such relief and delight: it was like magic, almost a miracle. How could it be that I could see and talk to Dylan so simply, at the swipe of an icon? I walked around the house smiling:  even if Dylan decided he wasn’t interested in Facetime, I thought to myself, I could use it to chat to staff.

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WP_20160517_004Dylan had a second Facetime session scheduled  for Thursday. After our first session I had emailed staff to say that I thought it had gone well but I would understand if Dylan didn’t want to do it again. I then tried to be as good as my word by not looking forward to our Thursday evening arrangement too much in case it didn’t happen.

Perhaps that’s why, this time, I signed in rather casually at the appointed time rather than ten minutes early, as I had before. Imagine, then,  my excitement when I found a message from Dylan to say he was waiting for me to do Facetime 🙂   This time Dylan was sitting downstairs in one of the resident lounges with E, his key worker.  I chatted with E about Dylan’s day and held up some things to show Dylan. Dylan seemed very relaxed next to E on the sofa and looked straight at the camera for a full 15 Facetime minutes. This is great, isn’t it? I said to them.

As I made to wrap up the session, aware that Dylan was getting itchy feet, I waved my hand and blew a kiss. Bye bye, I said, lovely to see you. See you on Saturday.  Dylan looked at me for a moment then suddenly all I could see were his features looming, getting closer – the top of his head first, as he stooped down towards me, then his eyes, nose and finally his mouth, kissing the screen.

15 thoughts on “Kissing The Screen

  1. Just awesome! I try to Face time with my twenty year old niece, who’s verbal on request and she says “hi” , giggles and and runs off. I am so happy for you!

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    • Susan I love your description of that giggle. What I think is fab about this Facetime thing is that even if you only hear someone laughing it’s better than only having someone else tell you they were laughing! It’s wonderful that you keep in touch with your niece this way – enjoy 🙂 And thanks for reading!

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  2. Hi Elizabeth

    I have just discovered your amazing blog, having borrowed ‘Your Autism Magazine’ from my workplace and reading your article on empathy, and I am now completely hooked! I can ‘feel’ the joyousness of that screen kiss in your words, it must have been truly heart-stopping for you. Some years ago I supported a young autistic lad who avoided eye and physical contact with anyone (including his parents) – to the point where he would become so distressed by others being in the room, he’d shut himself in a cupboard – over time we developed a trusting, relaxed working relationship and one day, whilst reading together, he started stroking my hand – I will never forget that moment, how I held myself together I still don’t know, I was an emotional wreck!! It became a regular thing and he was eventually able to tell me the word ‘safe’, which I took to mean he felt safe whilst with me. I am blessed and privileged to work with autistic young people, each with complex, very individual needs and personalities, but can honestly say they never cease to amaze and uplift me. I shall look forward to reading your blog and learning more about your son, autism and all that these wonderful human beings can teach us. Thank you.

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    • Hi Carrie – what a lovely story. Dylan used to climb into wardrobes and cupboards sometimes when he was younger – a memory I especially associate with being away on holiday – so perhaps like the boy you supported it helped him to feel safe. Thank you for reading and for your kind words about my blog, x

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