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Category: A day in the life

A general category that contains thoughts and activities as we live our lives with special needs.

In search of convenience …

In search of convenience …

Now! … which way?

Recently we went on a wheel walk at the coast. It had been many years since we were there to walk it, and wanted to visit to get advance information of writing the walk up in notes and publishing another suitable ‘wheel walk’.

Because of our sons requirements, anything longer than half an hours journey to get to our starting point, the first thing we look for are the public conveniences. Particularly disabled access ones for the wheelchair accessibility.

Our planned walk was to cover around 10 kilometres and as we were walking along the promenade, it was going to be linear, with a 5km outbound walk, returning the same way.

The first challenge we encountered was parking the car. We arrived at our destination at around 10:00am, but already all the key car parks had been filled. Including all the easy access/disabled positions – typically only 6 spaces in 300 and so we had to drive on to find a spot on the road.

Spending a little time setting up the wheelchair for our son and getting him into it, then dressing our dog with harness and lead, hooking up our sons grab bag, we get the signal that the ‘toilet’ is needed.

Not normally a problem as in a location like the seaside, public and accessible conveniences are normally frequent and well positioned to service the level of tourists visiting. We had not travelled that far from the centre of the town, but after walking for around 4km, we had not found any! We asked a number of people if they could direct us, and had answers as wide ranging from the ‘no idea’ to ‘you’ll be lucky, not here’ which did not help us.

Eventually we came across a sign which ironically listed the public conveniences – only one! and that was on the end of one of the piers, another 1.5km from where we were. Some joker has used thick marker pen and over the ‘Public Toilet’ sign has scrawled “NONE” – they were not joking!

We decided to carry on and find where the indicated toilets were, though our son, and by this time also ourselves, were getting increasingly uncomfortable and the joy of walking, became a rush through crowds to find our destination … and hope they were there, and open.

Our dog on the other hand was quite happy trotting along, relieving herself every now and again to mark her new found territory and leave her calling card. Pooh bags and grass verges, if only we could all be serviced so easily 🙂

We considered calling in to a cafĂ© or pub and use their facilities, but a combination of ‘No Dogs’ and poor accessibility of a chair greeted us, it was not an option to consider further.

Eventually we arrived at the Pier and not even looking to see if dogs were allowed or not, we boldly turned into the entrance and wow! packed, noise, screaming, no access was greeting us. As our son suffers with Autism, he was immediately impacted by sensory overload – The lyrics to the Tommy movie, Pinball came to mind relating to no distractions, and at that moment I wished! – We had to fight our way through people who either didn’t see, or didn’t care about our need to get through with a wheel chair and soon my ‘excuse me’ gave way to shouting ‘coming through’

By this time our son was getting into a distraught state and meltdown was only minutes away and we found what we were looking for … toilets! it was like seeing an oasis and we charged for them. I have to say, they were clean and well maintained and the relief was, by this time, wonderful. Not just because we could relieve ourselves, but also in the cubicle, it was quiet. Silent in comparison to outside and no flashing lights. Using this time to apply our interventions, we readied ourselves to return to the madness of outside and plot the quickest route back off the Pier to the quieter, though still busy promenade.

Any further thoughts of sensibly making notes for a documented wheel walk were dropped and we just headed back to the car, picnic and head for home.

Clearly a return visit to this seaside town needs to be carefully considered where ‘conveniences’ will be required and parking would need to be more central, so they can be accessed before the event starts. We took a number of pictures along the route and it may well be worth me writing it up as it could be fun, if managed differently and I will offer notes of caution and consideration from what we experienced.

And the important thing is, we did have an experience and when we revisit our pictures and we recall the mad dash we ended up doing, just to ‘spend a penny’ our son is in fits of laughter as we add a slight exaggeration to make the point and keep his memories good.

Take a break …

Take a break …

Take a break and do something YOU love …

An early lesson you learn when living with someone who has Autism, is not to take personally words or actions that might otherwise seem an attack on you. As we understood more and more about our sons disabilities and how they affect his life each day, we gained this understanding through meltdowns and tears.

We also learned that people outside our immediate family and close friends can also seem to attack us, our son, our life style some through innocent ignorance, others to gain an upper hand for some self indulgent delight. In the early years this made us angry, but over time you do learn to understand it and why it happens. Just like we learned to understand our sons actions were generated through a fear and confusion that we were not aware of, we came to understand that other negativity we encounter will also be disregarded on a personal level and not be affected by it.

This resilience doesn’t always work, after all we are only human and from time to time something always creeps through and annoys you intensely.  The bible tells us to turn the other cheek and for the most part we can do just that, but occasionally, you do have to walk away and do something you love that absorbs you totally so you can deal with that negative emotion and get rid of it.

I was reminded of this recently when I received an email in response to images and comments I share through my photography site. Normally I would disregard such things, but the words in this particular email did hurt. Though there is no lasting hurt, the event has made me consider what I do put out for public view. My ultimate goal through this site and my flickr site is to share our experiences and how we deal with various challenges, in the hope that someone who may not have the same confidence can share what we experience and hopefully realise they are not alone, others do understand and may be able to share a problem or support a solution.

Taking my own advice, I am ‘taking a break’ at least on one site, immersing myself instead in our garden to work on the sensory layouts and wildlife attraction and work on photo opportunities there for when I return to photography.

Don’t let a knock, keep you down, as was once said, ‘if I get knocked down seven times, I will get back up eight times’

 

Earn your happiness

Earn your happiness

“Happiness is a how; not a what. A talent, not an object”

Herman Hesse

Spending time with Psychiatrists and Speech and Language Therapists with our son, dealing with understanding his emotions and terrors, often he gets asked ‘what makes you happy’ ? Our son can never answer this and in truth, it’s difficult for me to answer it for him. One day he can appear happy and thrilled undertaking some activity, or doing nothing at all and the next, he appears unhappy doing exactly the same thing.

I’ve learned to turn thing son their head and look at it completely differently and when I found this quote many years ago ‘Happiness is a how ….’ I began to realise that it was not so much our son, listening to music, or being with his pet cat or dog, but more about how he enabled the music to play, the selecting a disc, setting the volumes and tones or what game to play with his dog, choosing a ball to play catch with and then, his dog chasing after it and bringing it back, or his selected piece of music actually playing and his listening to the beat, repeating the process to catch every beat played.

This, I learned is happiness, not just the result, but the journey taking you to it.

When our son is now asked ‘what makes you happy?’ I get them to reword their question to ‘what activity do you enjoy doing to listen to music?’ to which he answers, in considerable detail and with a passion how he selects a disc, examines the cover (he can’t read, so it is the design and colours) chooses the volume, the level of bass and treble and then the track number or how he decides which coloured ball his dog will play with, where he will take his chair to play catch. Again with such detail and passion as he talks.

I have realised that happiness can be, and certainly is for our son, a ‘how’ not a ‘what’ and this too has taught myself some very valuable lessons understanding this.

 

Happiness

Happiness

I’d rather be happy than right, any day.

Douglas Adams

Sound words, and ones that I hold close as I strive to learn each day. I don’t know all the answers. I’m sure not many of us do. But we do our best and seek input and guidance from elsewhere to fill the gaps or to look anew at the issue, while sharing what we ourselves have learned along the way.

This philosophy does gain cooperation and partnerships, even friendships as we share what we know and to be open to change our opinion based on sound information and argument.

I know I’m not right, not always. I have an opinion, that is strongly held. Ways that we would do things, or not, but through discussion and transparency of knowledge, I will build on my understanding and I will be prepared to change. Does this make me happy? Yes, it does and I feel more fulfilled because of it.

Present

Present

Enjoy every moment

Don’t spend time worrying about the future, it will ruin your present!

I picked this tip up a while ago and initially I thought, I can’t agree with this as we need to ensure the future is secure for our son. A place to live, money to live on, a care package in place, what will happen when my wife and I do ‘pass on’ and care passes to another for our son, will he be looked after etc.

Shortly before I took early retirement, now 18 months ago, I was in a particularly bad place with worry. Our son had been going through really bad terrors and meltdowns and the future, his future looked so bleak and thoughts about the future for him seemed to be going round and round without any answer.

A close friend told me, ‘you can plan so much, but beyond that, you have no control. Do what you can and then enjoy the time you have together’ I don’t know why, but those words began to make sense to me and I began understanding that I cannot have the total control I thought I needed. Suddenly, I saw our lives as ones that we were struggling with, to get through each day, worrying about things that in truth, couldn’t have answers, but I realised we needed to accept some things don’t have an answer.

We wrote up our Wills, took advice on ensuring that if my wife and I passed, before our son, his inheritance would be held in trust so as to avoid impact on his social benefits. We made contact with Carers and Care homes, just in case, so we are known to them and we review these annually in line with current legislation provision and then we leave it alone.

I took early retirement and now spend every day we have, together. Sometimes getting out and about, wheel walking and photographing what we see, other times, we need to respect our sons need for the security and quiet of home, and busy ourselves in the garden, or books, or music until he feels better. We have become more relaxed, we see things clearer and in fact some of those worries are also being answer, and in different ways than we though they would.

Our worry had became so excessive, that our ‘present’ was being affected, by not enjoying it and not living it, but waiting for the future to arrive and no fond memories to look back on.

The present is called that for a reason, it is a gift. Tomorrow it will be in the past and gone, unable to be altered and tomorrow, the future has yet to come. If you don’t treat today as a gift, you will not have fond memories and fail to see the future with excitement and anticipation.

I learned a lot in these few words.

Our friend did also say to us, ‘if we, as is expected, survive our son, then what have we done with today’s present, that will allow us to still enjoy those days after, without succumbing to a sense of worthlessness at that time.

…. that is another chapter and more difficult, right now to consider.

Dance to your own beat

Dance to your own beat

Dancing to a new tune

“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.

 

Doing nothing!

Doing nothing!

“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

 

Conquer fears

Conquer fears

“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.

Appreciation

Appreciation

A prayer …

“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.

A walk for the senses

A walk for the senses

A walk on wheels among colour and sound

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.

Easy riding

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.

The antics of Miss Bronte

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.

Coffee!

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 🙂