“When you dance, your purpose is not to get to a certain point on the floor, it is to enjoy each step on the way”
– ‘Wayne Dyer’
There was a time that I would worry over how we were perceived. As we learned that our lives would be different, new ways of living life had to be uncovered. It is interesting how many friends are no longer friends as we now dance to a different beat and appear not to conform to the usual accepted ways and their acceptance of what friends should be. It is also interesting how many family members are the same. Living with disabilities does tend to frighten people away, they do not know how to react or talk to or engage with us and their lives are too busy to even think about wanting to find out.
We do contribute to this separation ourselves too as we needed to learn to dance by ourselves and increasingly saying “no, I’m sorry, but we can’t …”
We did struggle with this at first, it felt like rejection and we became very frustrated in not being able to join the groups we once did and do the things we once did.
In time however, we began to realise that we were learning new steps to this dance, we could take to the floor in confidence and flare and we also realised that where we thought we had lost friends, in fact we had gained soulmates, more than friends, closer than friends and who would do so much more to help, or just to tolerate our pent up frustration and listen without running. We also learned that we could still walk across fields, row in a boat and teach other sin need to dance, even with a wheelchair.
And what is more, we enjoy it far more, we have learned to capture the moment, to make time stand still and live life. Every step in our dance is taking us on a journey that rather than restricting us, is making our lives more wholesome and fulfilling and we are meeting so many people who befriend us for who we are.
“Don’t underestimate the value of doing nothing, of just going along, listening to all the things you can’t hear, and not bothering”
– ‘Winnie the Pooh’
There are days, when sometimes we feel guilty by not being able to do something. Our sons condition often prevents him from wanting to engage with the world and it can be a challenge to even get into the garden and mow the lawn or prune the flowers, because he needs that constant attention.
There was a time when I would get frustrated at this seemingly waste of valuable time, but over the years we have come to learn that this is part of what we need to expect and to create activities not only to occupy our sons mind, but also our own minds when we remain indoor.
Our libraries developed, books, music and films. An interest in fact finding on the internet to answer those long abandoned questions, we never got round to discovering, genealogy (who am I really) learning to play a musical instrument – all that can be done within eyesight and earshot of our son.
It was on one of those days, I had revisited our library and in particular ‘Winnie the Pooh’ a classic from my childhood that has remained with me over the decades and this line “Don’t underestimate the value of doing nothing, of just going along, listening to all the things you can’t hear, and not bothering” resonated strongly. We use this technique with our son too, and spend time sitting comfortably, with eyes closed, listing for the sounds of life all around us, or absolute silence.
I no longer feel that frustration, what ever I needed to do, can wait until tomorrow … or the next day
“There are more things to alarm us than to harm us, and we suffer more often in apprehension than reality”
As a parent to a son with additional needs, I always need to think ahead to make sure plans and places are suitably organised. Parking, wheelchair access, refreshments, conveniences etc. the list goes on endlessly. Over the years, much of this we now do automatically and think nothing of it so we can spend time talking through the events with our son in the hope he will accept, and not reject, or react badly to the day out. His mind remains full of fears as he sees ‘home’ as his safe area, somewhere he can relax in comfort and not be harmed. Outside remains a scary place that he would rather not be.
Recently we were watching the news unfold about a suicide bomber, and vehicle and knife rampage, and in truth, our sons fears of going outdoors, hit us as well. It is an added complication in that, the theatre which had been targeted by the bomber, is one that we have been to on more than one occasion, and knowing the difficulty we had getting our son in, and out made us realise that if we were caught up in that evacuation, how would we get on. And, get out!
Likewise, the bridges where vehicles were being driven into people, are bridges we have been on, and again, getting a wheelchair out of the way is not as easy as just jumping clear.
‘We suffer more often from apprehension than reality’is very true, and the line of balance between safety, and experiences is moving. As a parent I argue great caution, but that may mean less exposure to experiences of life for our son. We need to encourage our son to go out and not reveal our own apprehensions as we plan more carefully, examine escape routes more closely, watch latest news bulletins and safety advice etc.
Perhaps we are being over cautious, I don’t know. People will tell you to just get on with your life and don’t be put off. For oneself, this may be sound advice, when you have the guardianship of another, and one who understands nothing of this so your making decisions on his behalf, that sentiment of ‘just get on with it’ doesn’t sit too easy with me.
“We tend to forget that happiness doesn’t come as a result of getting something we don’t have, but rather recognising and appreciating what we do have”
– ‘Frederick Keonig’
Sometimes, tragic events make you realise this often forgotten fact. Today I was asked to become involved with a steering party to bring what we have learned as parents of a son with complex needs, to a group working with our local authority to develop a support structure for those young adults with additional and complex needs. It appears that what we have, and how we approach various challenges has gathered interest.
As news also developed today of 22 lives being lost in Manchester through terrorist actions – many of them young people – and another 59 retained in hospital, I had to consider how fortunate we are and that our son will awaken tomorrow morning and look into our eyes, unlike some parents who will never look into their children’s eyes again.
We pray for those who have lost their lives, or have been hurt, and their families, and give thanks for what we have.
Taking place a little time before my last post, we could see that our son needed some gentle sensory stimulus and we knew just the place. At the side of our favourite Hollingworth Lake country park walk, the visitor centre is surrounded by woodland – and, as it is also a car park, the access roads are ideal for wheelchairs. The key, is to arrive early, before the car park fills up and at the time of year, the colours from the wild flowers and the birdsong is delightful.
Taking our time, we stroll along the paths, being tarmac, they were smooth and the ride in the chair immediately begins to ease the rising tension.
Halting at a suitable point I try to focus our sons mind on what (hopefully) his senses could detect. ‘close your eyes’ I tell him, and ‘tell me what sounds you can hear’ At this point, there was birdsong, the breeze was rustling through the long grasses and trees, children were laughing as they played on nearby swings and our dog ‘Miss Bronte’ was sniffing and snuffling through all the undergrowth. There was also the distant sound of a tractor in a farmers field and so much to focus his mind and ears on.
Our sons eyes close and (I think) he listens. after a few seconds of unresponsive reply, I gently prompt him. ‘Tell me what you can hear’ … his eyes open, breaking that connection with the sounds due to visual stimulation that comes racing in, but he did tell me ‘Birds’ …. That is good enough for me.
I tried to tap into his visual focus at this point, but without any success or cooperation. ‘Tell me what colours you can see’ I know he knows his basic colours and so the ‘blue’ of the abundant bluebells, the ‘green’ of the foliage and ‘brown’ of the tree trunks would have been a success. Sadly, nothing! We walk on in our (now often) pattern of me talking and explaining what I see, explaining that which I know about wildlife and geology, even a bit about geography and the history of where we are. I’m not sure how much is understood as my occasional questions, go unanswered. Even the antics of Miss Bronte appear to go unnoticed.
We are only about 20 minutes into our walk when we begin to head back. In some ways, this was not a real success and practicing our sensory focus routine, but in other ways, how great it was to get outdoors into this wonderful country park. We have pictures that have formed part of our sons activity stories, so we can revisit and recall the event and use it to plan our next trip here.
We arrive back at the car, unpack the flask – yes I did remember it – and looked out across this countryside, drinking our hot brew and a piece of cake. Though we consumed these in silence, I knew our son was feeling comfortable and safe in each others company and as we head home, I could see him relax into his seat for the journey.
We measure the success of an event like this by the fact that we did it. Others may have family members and their children excitedly laughing and chatting in preparation of going and throughout the time spent there. In our way we experience the same, but the signs are somewhat different and that laughter and chatter may just be a look, or a raised eyebrow or just the fact we could do it without having a meltdown. For us, this is all the excitement we need.
My message is simple, sometimes we dance to a different beat 🙂
Some days, only some, the difficulties that our son experiences seem to extend their reach to engulf others.
Today, as I walked alone through the park while our son was having a coffee brunch at the social lounge he attends, I was thinking about the report we received recently from his Psychiatrist. Painful to read, it suggested that he was losing interest and enthusiasm of life, fearful of virtually everything and incapable of making the choices that would be expected of someone of his age, trying to establish himself in this world.
His Psychiatrist drew attention to how his outlook is worsening and that activities he was once involved with, hold no interest for him now.
Our dog, Bronte, looks at me. Deep dark eyes that seem to understand my thoughts but can offer nothing but the power of distraction as she wants to fetch and run after her ball.
As a father, I had once thought about kicking a football together, playing catch, casting a line fishing, maybe even walking together coast to coast, the Pennine Way or three peaks. Even watching him finding a partner. We realised early on this was never going to happen and that our time together would be focused on other, more basic things. We have known from the time he was born, that his life expectancy will be shortened. After thirty years, he has already surpassed medical expectations, and we have blessed every day. Reading this report, one of several that have identified his increasing difficulties, I wonder as I walk alongside the boating lake, are we heading into a new phase in his life, one that is not as fulfilling as his previous challenging years.
Am I up to it? can I effectively support our son, my wife, with continued enthusiasm and excitement, when it seems everything we do for him is met with disinterest and refusal, turning increasingly uncommunicative. Maintaining self motivation is essential, creating new ideas to stimulate, being prepared to be flexible with these plans and to brush off rejection and complaint. They don’t matter.
We complete our walk and return to the social lounge to collect our son. I meet with the service providers who tell me “he was fine, he’s interacted and enjoyed the company around him” ….. looking though the window, I see our son sat at a table, alone. His head bowed and face expressionless hands on his lap and nothing like interaction going on. As I enter the room, there is no response until I sit directly in front of him and quietly say, “lets go home son” and I get the first response as his head raises marginally and sad eyes look towards me. He moves to get out of his chair and we head home. The remaining hours of the day were quiet and unresponsive. The words of his Psychiatrist continue to haunt me and I can only take comfort in the fact that my presence does appear to reassure and comfort him and at times we do achieve good things together.
What the future holds for us all I do not know, I’m certain we will be walking parks, sometimes together, sometimes alone.
As we got up to the radio alarm with the weather forecast suggesting a heat wave for the next few weeks, and indeed the sun was shining through the windows, we thought ‘ Park walk’ 🙂 It is not that pleasant sitting in a wheelchair when it’s windy or raining, but when the sun shines, it can be quite a treat.
This event had been planned several days ago so that no sudden changes would prevent it from being a day to look forward to and we had looked at the long range weather to select the best day. You may have read about our pictorial calendar which schedules activities in some detail to keep our son’s mind terrors at bay. We go through the usual preparations of checking the grab bag, harness and lead for Miss Bronte our dog and load up the wheelchair into the car and we set off, all full of anticipation.
Arriving at the parks car park, I’m conscious that getting out of the car is probably close to the half hour that it takes us to get in. I keep everyone in the car while I pull out and set up the wheelchair, select our hat’s for the walk (woolly for when it’s windy and cold, baseball for sunny with cloud and the full brimmed for all round protection in a sunny and cloudless sky) today, we (our son) had his baseball cap. Helping him from the car to the wheelchair I make sure brakes are on, chair belt is adjusted and secure and then I get Miss Bronte into her extending lead and link her to the wheelchair too. She is very good at walking to heel, but I need to give her a little extra lead as walking to ‘wheel’ is a new concept to her and I have to mind those doggy toes don’t go under the wheels as she crosses in excitement from left to right and back again, sniffing out all the doggy messages left on their very own doggy social media – it seems like every tree, post or grass verge has some message there!
Locking the car, we are ready for actually getting into the park. A short walk from the car park to the controlled crossing via an access ramp our local authority is very good in providing and our son presses the traffic control button to summon ‘the green man’ – when he appears we can safely cross.
I always remember we spent some time in Blackpool a few years ago and as we always do, we stopped at the crossing and told our son “wait for the green man” This lady alongside us was clearly fascinated by what she overheard and as we repeated the “wait for the green man” she told us that at initially she thought there was going to be someone turn up in fancy dress of some sort and went on to say that she had never thought of the crossing in such a way. We began chatting and it made us realise just how much detail we do actually think about and explain as we guide our son through life’s everyday aspects that perhaps many of us just take so much for granted and no longer think about.
Thanks to the ‘Green Man’ getting us safely across the road we eventually arrive in the park and the tree-lined trails and pathways open up in front of us.
This particular park (Queens Park, in Heywood Rochdale) has been a favourite of ours for many years. It is always well maintained and boasts the usual swings and open fields as well as bowling, but also a boating lake – sadly without the boats now – skateboarding park and lovely landscaping. For us, the pathways make it. Tarmac surface with only gradual gradients, which make it ideal to walk around with a wheelchair.
Covering the usual circuit – our son likes the routine, we stop a while at the bowling green where the groundsmen are preparing the surface for the coming season. Empty today, but soon it will be full of crown green bowlers.
There is a cafe within this park, those who know us well will know we always plan a wheel walk around a cafe or a picnic. Recently closed in preparation for new management, I’m delighted to say, it has now reopened and trading well and we take the opportunity to indulge in a short coffee break and a toasted sandwich. The added benefit of it being dog-friendly too, but today, we stay outside in the sunlight and watch the world go by for a short while.
Drinks finished and our toasties are eaten, we dispose of our rubbish and head back to the car park for the return home. It can take almost as long to prepare to come out and pack up again as we spend actually outside walking, but that is all part and parcel of the event. The important thing is that we made it out with an enthusiastic start and completed the walk with ongoing interest.
All in all, a successful day with a smile just breaking out. A Social Story now being developed as a memory jogger and discussion point to aid a positive return at some point soon.
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
A visit to a Psychiatrist with our son left us with many questions and uncertainties and I’m not too certain of the value of the visit to us.
The line of questioning was met by our son with a blank expression. Not understanding what was being asked of him, causing him to withdraw into a silent world, showing no interest and so I was responding on his behalf.
We were told that our son is extremely anxious and depressed and that we should consider anti-depressant medication for him – in conjunction with his Neurologist and his anti-epileptic medication – I’m not so sure! One valuable opinion we were given, was that our son will be trying to establish himself and forge his own identity as anyone would, or does and that he will be frustrated by his inability to express himself emotionally in such a way to be understood. It was suggested that we ‘listen’ more to what he says and that we should respect his reluctance to do things or go places as him saying ‘no’ and allow him not to, as that is his choice.
Experience has shown us that our son will very quickly get into a routine of ‘not doing’ and ‘not going’ and instead he finds his comfort from just sitting and experiencing very little and not looking for more that life has to offer, his world becomes that which is immediately in from of him.
We are now going into further debates around increasing medication which hopefully will control his seizures, but there will be side effects, not least of all increased lethargy, which will make engaging the world outdoors more difficult that it is already, but there is a concern about the damage uncontrolled seizures are having if we do nothing.
Helping our son overcome his anxiety and depression is essential as it is life restricting for him and challenging to our family unit. With respect to our Psychiatrist’s comments, I do retain a belief that having an interest in activity and ‘places’ is paramount to his recovery, giving him something to see and focus on and if handled correctly, creating happy memories rather than accepting his resistance. I do need to consider and reconsider, and no doubt reconsider again, our methods of motivation and enthusiasm to create a desire to even step over the threshold.
We started this website blog with a desire to travel accessible wheel-walking routes and to try and return to that interest is our aim. There is much to do and it will take time, there will be constant setbacks, and resilience is going to be essential. We should not ignore professional guidance, nor will we, but we do need to consider our own parental observations and understanding of what works to find that elusive balance. Our journey continues …..
Engaging the world and all its wonders can inspire, and settle the troubled mind. You don’t need to do much, and to venture outside your door into your garden or balcony will bring your senses into contact with the smell of the fresh air, the sounds of birds singing, the murmur of life happening. As Neil Diamond would say ‘there’s a beautiful sound …’ and as we work with our son to engage with mindfulness activities, we find many a true word in those lyrics.
Our son doesn’t always feel up to actually going out on a visit somewhere, and so we built and accessible deck, a veranda that he can step or wheel directly onto from the house, with all the safety that home provides, but with all the added benefit of being outdoors. He can sit in the sunshine benefiting from the value of it and the fresh air and we spend time working on our ‘senses’ game. Name five colours that you can see from where you are sat, name 5 sounds that you can hear with your eyes closed, name five smells that you can detect with you eyes closed, name five feelings that you can touch with you eyes closed.
It helps that we prepare with a selection of herbs and other textures when we do this and it is important that we play it for only just long enough that his enthusiasm allows, or it would become an unwanted chore, linked with being outdoors and a resistance would develop and make the task harder in future.
Of course, we are often joined by our pets, who just want to be in the act as well, and often our senses pick up the barking of a dog, the feel of her fur :))
There are other times when we do get further afield, and to walk through the park with the distant sounds of children playing, the river as it runs its way across rocks in the riverbed, maybe a steam train passing by and we look for various things to identify with. A recent trip to a local park coincided with an Easter Egg hunt. This was an ideal opportunity to extend our ‘game’ to broaden the scope of identifiable items. It was for children, but when we spoke to the organisers about what we were looking to do – basically, just using their treasure map – they were immediately helpful and allowed us to join in … as long as we didn’t want, of find an egg 🙂
Even though the day was dull and cloudy, we had such fun and a great experience to add to our social stories of successes that we can also use to help recall the feeling of ‘happiness’