We agreed that we would venture on a short wheel walk today. Trying to build up confidence and enthusiasm for getting outdoors again. The sun shone – before it snowed, yes we had snow again. though it did not last long and it didn’t stick, but we were pleased to be back in the car with our flask of coffee just as it started.
Still niggled by the almost casual reference to taking anti-depressants to help our son by his Psychiatrist last week, I am convinced that by using all the techniques and opportunities of mindfulness practices, we will help him better, given his already high dosage of anti-epileptic medication, and other complex issues. Please don’t think I am ignoring sound medical advice, and I certainly would not suggest that, but in conjunction with our son’s Psychiatrist and Neurologist, we are agreed to try all approaches to ease his anxiety, depression and seizures.
Social storiesTM were created by Carol Gray in 1991. They are short descriptions of a particular situation, event or activity, which include specific information about what to expect in that situation and why. I have been taking photographs of our days out for some time and cataloguing them in a large photo album as a reference to a previous event to help our son recall what we did and to support understanding with what we will do next time we do it.
Adding words to these pictures as developed by Carol Gray in a form of ‘Social Story’ is an idea we have looked at to read a consistent set of words each time we look through the photographs. I wanted to try and put in those words that our son speaks as we undertake the activity in the hope this will become more ‘real’ for him, though inevitably I have had to supplement this with others too.
It made sense to me to try and build a library within this blog so that others may take inspiration and replicate in their own way if they feel there is a benefit. I would strong urge reading about Social StoriesTM through this link and the National Autistic Society web pages for further advice and guidance.
Our day started at an existing written up wheel walk, at Hollingworth Lake in Littleborough, Rochdale. We woke early (in anticipation, which was a good start) got washed and dressed and had our breakfast. The routine of packing a ‘grab-bag’ – for medical and other essentials – a choice of hats (it was freezing even though the sun was shining) and winter coat. Made up our sandwiches and flask – our son will only drink coffee from a flask, he won’t touch tea, but will do the reverse at home and never touch coffee! just one of those personal habits – and we are ready to go. Wheelchair in the car, dog secured to his seatbelt harness and off we go.
Parked up, we transfer into the wheelchair and a lovely smell of chips frying greet our senses, all of a sudden a cheese sandwich doesn’t sound that exciting (note for next time!) I am keen that our son tries to capture pictures himself as we travel around. I find it helps his recollection and sense of being in control, though on this trip I was not able to take the tripod with us so he tried freehand, but a bridge camera with one hand is not the easiest thing to operate. Never-the-less our first picture is our sons as we ‘head out on the (wheel walking) highway’.
“It’s freezing” our son shouts out and wrapped in his heavy coat and woolly hat, I just knew this walk would be short. We were, however, outdoors and this walk was going to last as long as it was, and however far we got, it was a success. This is a new walk for our dog, Bronte, and she was being kept on her lead today. She has a great nature and only ten months old, full of excitement and curiosity. Gets on well with most other dogs we have met, but when I’m in charge of the wheelchair as well, particularly alongside a lake, full attention is needed and I can’t be chasing after a terrier who has just seen something of interest in an adjoining field. Walking to heel is one thing though, walking to ‘wheel’ took a little longer to master and I needed to be careful not to trap paws. There is one thing about this particular walk, or maybe it’s just the area, but everyone and I mean everyone we passed, said good morning or hello to us. Even the man on horseback tipped his cap to us.
This walk started with a beautiful cherry blossom tree, a beautiful reminder that we were well and truly into spring and we spent a little while talking about the colour, picked some to see if we could smell any perfume and watched as the breeze was already blowing some of the blossom clusters into the blue water of the lake. Bronte took advantage of an early Pit stop in the grass verge and our path lay ahead of us.
This is a favourite walk for many people. We passed lone individuals, power walkers, mums and couples with prams, pushchairs and toddlers. Dog walkers, cyclists, runners and also carers with their charges and horse riders. Many people having the same idea as ourselves. Taking in the fresh air and enjoying this beautiful country park.
At a conveniently placed bench, we take a moment. Sheltered from the biting wind to talk. It’s not that we haven’t talked all the way to this point, but all of a sudden, the silence was deafening and I knew something was wrong. Twenty minutes into our walk, I had already checked for headaches, but asking again, no, it wasn’t that. Is he too cold? No, it wasn’t that. “I’m alright” he tells me but clearly he’s not and increasingly I can tell the signs that we are heading towards a meltdown. Trying to retain as much enthusiasm as I could, I encouraged him to agree to a little further and set off, Bronte wondering why we had even stopped as she was excitedly checking of the scent off every place marked along the way.
Experience told me that something had been smelled, or seen, or heard, or felt that had triggered thoughts which were now causing terrors this walk was meant to dispel. The key was to be supportive, talking calmly and continually but knowing I was talking to myself and that it was only the sound of my voice that would be heard, not the words. We walk on to the next corner and decide that although the lane ahead is a lovely stretch with wonderful scenery to savour. Heading back was the only sensible course of action. I look down this lane, almost longingly given we cannot go down it and it brings to mind the title of a book by Ellen Notbohm – ‘Postcards from the road less travelled’ there are times when my wife and I think we are always on this road alone, travelling where others do not go, or even know where it is.
We retrace our steps and after another twenty minutes we are back in the car park. Getting our son out of the wheelchair and into the car can take a surprisingly long time, or so it seems, I’m sure it’s only minutes, but putting the brakes on, undoing to safety harness, lifting the footplates, raising him up and across to the car seat, swing his legs in and make sure he is comfortable seems to take an age, longer as it starts to snow at this point! With Bronte secure and the wheelchair collapsed and put in the boot, I recover the ever ready flask of coffee and sandwich – still smelling chips in the air – after a while, the silence gives way to a few words. “I have enjoyed it” “I said we should have had chips” and then “Do you love me?” ‘That’s good’ ‘I know, maybe next time’ and ‘Of course I love you’ I answer in turn to each. Of course, there is no eye contact, he’s staring at the dashboard of the car, not even out of the window at a small marina where yachts are being readied for the water.
“Are you with me tomorrow?” was the next question and immediately all became clear. We have an appointment with our sons Speech and Language Therapist tomorrow and I had explained earlier in our walk that we would need to be up and dressed early in the morning to get to the meeting on time. This seemingly innocent piece of information was received with unfathomable depths of despair and fear as he struggled to process what this meant. We were at the lake today and to talk about tomorrow, today, about something he struggled with last time, was just too much. Meltdown!
I’m delighted to say that as we look out of the window at home, as the snow falls, we have again worked through the Speech and Language Therapy meeting and we have also worked our way through the ‘communication passport’ and ‘Talking Mat’ again that we have put together, together and he is now more comfortable with it.
The short walk today was a success, we managed to get out with an initial enthusiasm, we are talking about ‘next time’ which is a success – often we will get “I’m not doing that again” – but he is asking for a ‘chippy’ dinner to go with his picnic and to sit on the picnic benches rather than sit in the car too 🙂
Roll on sunny warmer days!
Our Activity, or Social Story is simplified to key points
- Get up in the morning and ready by 10:00am
- Pack the car with Grab Bag and Wheelchair
- Make our Picnic lunch
- Set off to the lake by 10:30am
- Park the car and get into the wheelchair
- Walk round the lake to the café and say ‘Good-morning’ to everyone we pass
- After coffee, head back to the car, pack up and head home
I don’t yet have a photograph of every stage, but this will be developed