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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.

Never Forget

Never Forget

“If you ask me how many times you have crossed my mind, I’d say once because after that, you never left …”


It’s funny how some people just seem to make an impression on you. For whatever the reason, their memory is held and thoughts of them remain with you.

It might be an unexpected kind gesture, a kind act, and encouraging word, empathy or just their personality and character captures your imagination in some way. I’m not referring to that romantic impression – though that works in much the same way, but is not for this blog – but those few people with whom as a parent carer, or cared for individual, you feel immediately comfortable in their presence, or even in distance communication as with a pen friend (as we used to call them) or ‘friended’ and linked through social media in todays world.

I began thinking about this today and that this must also work the other way too – strangely, something I had not thought of before – but I happened to bump into a nurse we had met in a local hospital with our son. She recognised me first and came up asking “where is that lovely young man of yours” We hadn’t seen this lady for many years as she had long since retired and although we still attend the hospital, she is no longer there. We do often say to each other though ‘I wonder if MarieAnne is in’ and why, because she took time with our son and tried to engage with him and brought a smile to his face when we visited.  Our son still talks of her as well, even though it is years since we have seen her.

My day also took me into the local supermarket to get some shopping and though our son was not with me – not so well again – the check-out operator asks me “where is your son today?” and “wish him well from me”. I am touched that he has in some way touched not only these people, but several others as well, who also ask after him, or stop us when we are together and talk to him even though there is not much response. All these people are held somewhere in his mind and heart, and certain triggers will prompt him to talk of them even though they are not there.

The same is true of on-line friends who, through our joint attempts at photography have allowed a number of people to follow and understand our story and although we don’t know you in person, we have come to regard you as friends in the same way. Our son regularly asks if one person or another has written or commented and he too looks to see into your worlds as we talk about your own pictures together.

This post is really to say, “Thank you”. To all those who have never left our minds, thank you for being there. Regardless of our being chatty or quiet, being with you in person or on-line, thank you also for holding our son and ourselves in your minds and offering us such welcome support.

We couldn’t do it without you 🙂





Searching for answers

As they say, “The answer is out there”…. I’m not so sure all answer’s are out there, at least not yet, and frustratingly I have been searching for understanding, techniques and interventions to help our son.

Following a recent review we have been looking anew at how our son is being affected by his complex disabilities, in particular his Epilepsy and Autism. To assist our sons neurologist we track, types of seizures, duration, frequency, after effects, side effects etc. When it is charted, we can clearly see a deterioration in his condition and a significant increase in seizures. Coupled with this, is additional work done to track behaviour for his Psychiatrist. Moods, appetite, interest, interaction, and timing in relation to seizures etc.

I have learned that there is a relationship between seizures and anxiety, which can lead to a diagnosis of Epilepsy, when actually it is more linked (in our case) to Autism. ‘Non Epileptic Attach Disorder’ it is called and even has an acronym, ‘NEAD’. Trying to find help to understand how to distinguish between the two has been so far impossible, even though a very comprehensive document has been written.

My belief is that we should seek interventions by which we can ease our sons anxieties and through this, reduce the higher level of seizures which are not being managed through medication. My search has taken me to the USA and Australia and through my continually asking the questions and posing und our position, I have been helped, not with distinguishing the differences of basis of the seizure, but in trying to address some of the anxieties he has.

I have subscribed to a course of ‘Cognitive Behavioural Intervention’ (CBI). This is a modification of CBT aimed at those with Autistic Spectrum Disorder (ASD). Will it help? I don’t know yet, but I am hopeful, as I am a firm believer and one time user in business of CBT and NLP. I listened to a radio interview today with a leading neurologist who was saying that we just don’t know enough of Autism or Epilepsy and no great steps forward have been achieved, with very few people taking up neurology as a profession. This may explain why we have just been prescribed an array of medication and are no further forward in helping our son.

My challenge is to find a way to help our son understand what we will be working on together that will make sense and help focus and calm his fears. Maybe if we can do this, we will see a reduction in the number and frequency of his seizures, and then maybe, the medication can treat more successfully that which remains.

The answer is out there, maybe, just maybe, I may find it ourselves!



Making preparations

“The best gift comes from the heart and not the store”


Those of you who have followed our story over the months may recall that we have found, when supporting someone who has Autism, complicated with other disabilities such as our son, change can create terrible anxieties. At this time of year, when Christmas adverts are promoted across TV and radio, and a trip down the high street reveals seasonal window displays, festive lighting, bands and other street artists, and crowds of people, all bringing their own cheer to us, spare a thought for those who find such things just a little too much for their senses and can develop serious anxieties and fears very quickly.

As someone who just loves the magic of this time of year, I have a need to see and experience as much of these things as I can and my wife and I just love it when our son can smile at what we all share together. To achieve this, we need to plan ahead, we have found that the secret is nothing more than a gradual introduction to the season, the events and the biblical meaning behind Christmas.

You may be surprised to hear that we visit garden centres a lot!  They always put on super displays of decorations and lights. Publicity is sent to let us know the date and time of the  “Christmas Opening” with music and wine and other fabulous enticements. For us, we visit weeks earlier, to see the gradual removal of pots and plants to make way for the glittering displays to come. To see the gradual transition allows are son to come to terms with the changes, we can talk about it, we can ‘peek’ behind the security curtains to see what is going on and we find he can accept the ultimate result far easier because it’s not sudden.

Likewise, a trip down the high street early enough to see the changes happening helps the transition to Christmas displays and acceptance without the fear.

I often get asked, “what do you mean, fear?” and “How can a changed display create fear?” etc and after nearly 31 years of understanding the effects these things have on our son, I suggest to them, that they imagine waking up in the morning and as they open the front door to go to work, or school or whatever they usually do, and instead of what they usually see, the driveway, the car, the street, is not there …. in their place is a vast ocean, no land in sight and to further image if they turn around to go back indoors and when they turn, their house has vanished and that ocean is there too … endless water, and nothing else. I ask “would you be disorientated and a little fearful as to what has happened?” invariably, they answer yes. This is something like how I have come to understand what our son feels when there is a change to his surroundings and environment. Of course, he doesn’t see the ocean, but flashing lights, decorations, displays which are all a different sight to him have that very same effect, creating disorientation and anxiety.

We take the same approach when we look for a gift for him. Surprises don’t work, in that, as they were unexpected, a sudden panic and anxiety attack takes hold and the enjoyment is not experienced. Worse, the gift is from that moment on associated with something stressful and never really appreciated. So we go out to the stores together, and I have to be very attentive to what he looks at, or talks about, as that will indicate a level of interest. Over several weeks we will return and talk about it some more and how we would use it, where we would keep in in our home and eventually we will make the purchase together. We wrap it up together and put it somewhere safe together and the surprise moves not from what will be unwrapped but more to a countdown of the days until it can be opened again. If you think that a countdown is not exciting, please think again!

In truth, it’s not so much what we buy, but the way we go about it, spending such quality time together, looking, talking, laughing and planning, and avoiding the build up of anxiety that is the real treat here. Our son now talks about what we did last Christmas in a positive way, and that too was all about a gradual supportive approach and he recalls those positive moments with joy. He’s looking forward to the trips to the garden centres, the Nativity displays, the Church services, the wrapping of gifts, the making of Christmas dinners, even the annual Queens speech.

We have done the same for our Christmas decorations at home. In putting them up, we work towards the first day of Advent, but not a date to put up our decorations, but a date by which time we have completed them. Our decorations, and one of our  trees are being put in place, gradually throughout November so that again, any sudden change is avoided. This year, we are taking advantage of the new decking which is a visual point he can see from indoors as well, and a new pot grown tree has been introduced, that he has accepted and will become familiar with year round with anticipation and of solar lights being put on in a couple of weeks. After Christmas, this will be relocated in the garden and tended through the year and re-potted until we bring it back to the deck again next year.

Gifts are lovely to receive, but for some, its the reassuring company, the approach and the support that is the magic of Christmas. We are blessed with a number of friends, some we see, some are on-line, but equally valued and loved and who join us to make each day special for our son.

Thank you all 🙂

Reviewing …

Reviewing …

Raindrops on roses

“Some people walk in the rain, others just get wet”

Roger Miller

I’d like to think that I maintain a positive outlook and it’s true that our son will pick up on the slightest emotion that my wife and I show, consciously or subconsciously. His emotional wellbeing is so dependant upon us, regardless of what he is doing at the time. If we smile, he knows things are calm and safe, if we frown and hold a stern expression, he questions, “is everything alright” ? and we have to quickly and confidently recognise this and change, to exhibit a happy smiley face and demeanour.

He attended a review in the last couple of days. A clinical psychiatrist and speech and language therapist kept him (and it really was a feeling of being ‘kept’) for over an hour and a half, questioning this and questioning that. For me, I thought many of the questions were asked without any regard for his learning disabilities, which just served to increase his anxiety at being there. Looking ever more frequently at me as if asking for help, without uttering a word, I did eventually bring a halt to it as I could see a meltdown happening and he had been there way too long.

True enough, the wild and uncontrollable temper, coupled with severe upset followed and it was all that I could do to get him home and go through our ‘safe’ routines while keeping a smile and calm voice throughout.

The specialists need to know what progress has been made in a relatively short space of time, but for our son, it seemed like it went on forever!

We have been told that he hasn’t developed at all since we were there last and that many fears and anxieties had been amplified. A backward step. Medication changes had been responsible for some input to this as well as a lack of adult care support for those over a certain age with Autism and additional complex needs. In short, if we don’t, nobody will.

We have come out armed with more techniques, ‘Talking Mat’, ‘Room Diary’, ‘Audible and Visual event slideshow’, ‘Short trips’, ‘Happy pictures’ so on and so on …

I’ll not knock any of them as they all have their place, and many we have used successfully but I do get to regret that his autism was not identified at a very young age, but rather struggle through the last 30 plus years and now trying to re-educate his mind to develop coping mechanisms that will last and not forgotten at the slightest change.

It is through times like this, you need to have a mind-set that you ‘walk in the rain’ and not ‘get wet’ as the successes and achievements, no matter how small and brief are well worth the continual effort that is needed to achieve them and though you may feel alone against the world with the ongoing challenges, your not really, and to quote a line from a movie  … ‘help will always come to those who ask for it’ …

That help invariably comes from your friends 🙂




A ray of sun

A ray of sun

On a sunny day in October

Following days of rain and high winds, the sun came out today and boy, do you feel better when it does. Spirits are lifted, the remaining flowers of the season open to take in as much warmth as they can and we can get outdoors even for a short while.

As if sensing I needed a boost after my couple of week away, my son and I were approached today as we walked around the park with his wheelchair by someone who we didn’t know and they said ‘thank you’ taken aback, I asked ‘your welcome, but for what?’

It transpired that through my photographic work on Flickr, a friend of this person has been following our story that I share there as well, more through images than words, but I reference this blog too. That person, it appears found the confidence through what I have said, to seek support themselves for their particular needs and received it for the first time in many years. Overjoyed with gratitude, they had begun conversations with the person who we were now talking to and apparently urged them to also look at our work and message.

The person who originally followed our story lives in another country, but the person we were talking to lives near our home town, but had been motivated by his friend and what he read in my words to venture outside for the first time in a long while and travel the path I wrote about. By chance, or destiny, he chose the same park and time as we did and apparently through recognising my hat, he plucked up courage to come and talk to us.  He is a wheelchair user and had reached a point where he felt trapped indoors, but reading what we try and promote he found the determination to get outside, with an assistant and experience for himself an accessible route to travel.

We shared our flask of coffee, talked some more and then went our own way, but what a boost and what a thrill that I found today that not only one, but two people have found value in what message I have put out and that it has help change their lives, I hope, for the better for a long time.

I learned something today, and that is the smallest and quietest things can begin to change the world for the better, your comments and support have reminded me of that and I am eternally grateful. Today I have found that something tangible and good has also happened through all our collective support and help.

My message to anyone else reading this, is not to underestimate the strength of your own message and experience, which may help someone, somewhere lead a better and more inclusive life.



Do you really see him?

I had to spend time recently sitting on a jury – part of our civic duty and ‘apparently’ an honour and an opportunity to influence my community.

It was an eye opener in many ways, though much I am unable to talk about due to legal obligation and duty, there were aspects that opened my eyes to how our ‘community’ is developing.

Due to travelling arrangement into the City, I took the train. In two weeks I was unable to take a seat, there, or back again. It was packed, standing room only. I value greatly my early retirement and not having to face this battle each day any longer, but I was thinking about how would I get our son and his wheelchair on, when people ewer literally being pushed on. Yes there is a wider access door point for wheelchair users and yes there is a ramp do bridge the gap between platform and train carriage (or ‘saloon’ as the guard called them), but there is no way, I would get a chair on. I did mention this and was told “get a later train” which is all well and good, but if there was a need to get a train to arrive in the city for around 9:00 – 9:30am, for medical appointments or legal appointments etc. there is absolutely no way we could do it. And the Authorities say travel by public transport! Buses and Trams were as bad.

I was appalled on a couple of occasions when I saw a young mother trying to battle with a pushchair to get on and off. Everyone just pushed past her as if she was not even there. I offered her help to lift the pushchair and toddler on and off and received profuse thanks, but also a strange look as if receiving assistance was completely alien to her.

I did get to thinking, how old I had become since retiring. I offered a “good morning” on so many occasions, only to receive a blank look from people who had coffee in one hand and smartphone in the other, headphones or earplugs plugged in giving the impression of them all being cyborgs, being programmed by this central brain … the mobile phone! nobody spoke. Nobody even acknowledged me, or anyone else as we travelled pressed together like sardines in a tin.

During the jury service, I had to face some horrible evidence shared with us and I will admit our small group of twelve did, and still do suffer from recurring images of how bad humanity has become, but it shocked me totally when discussions we were having during our deliberation raised the question of disability and mental illness as well as  the effects of medication. I thought I spoke from a position of knowledge and experience, offering coherent argument and debate. To the last person in that Jury panel, they disregarded anything I had to say as relevant to the case and even went as far as to say I was talking rubbish.

I’m happy that others have opinions, but here it was clear that no consideration for disability or mental illness plays any part in crime, or accusation of crime.

It brought to mind an article by the National Autistic Society who were reporting on the very high number of people with Autism are in custody purely because nobody in the police or judicial system has an understanding of how a person can react under certain circumstances where sensory overload is aggravated rather than calmed.

I fear we live in a very blinkered world, and too quick to judge on what we see, not what we understand and I give thanks that my wife and I are still in a position to care for our son and not ‘abandon’ him to the system.

Not impressed

Not impressed

Always a greeting

For a few days, I have to take part in civil duties. That means I will be away each day. Our son continues to be cared for and watched over by my wife and his Aunt, but I’ll not pretend the absence of myself or my wife for such long periods of time is not easy for him to come to terms with. He lets us know in many ways how much he is ‘not impressed’

We will get through it and he will get through it, and keeping him active is even more important during this time.

He’s not alone in being affected by this as we realise that Lady Bronte has grown accustomed to our routines now as well. Almost anticipating what we will do when and being ready to join in. Always with an ear on the door or the car engine when one of us is out, desperate for that little sign or sound that we are returning.

We don’t leave her alone or caged, even for a short time, and she comes with us everywhere. When we did recently all have to go out, we took advantage of a lovely ‘pet-sitter’ who lives nearby and who took her walking and swimming for the time we were away. socialising with other dogs too, she had a ball.

In the next two to three weeks we are hoping she will be joined by a new feline sister. A 14 year old cat that we are adopting into the family. We have always had cats around the house and Lady Bronte was fabulous with our last cat, who has sadly passed away now and we don’t want to leave it too long before she is reintroduced to one. Before Lady Bronte, we had a golden Labrador (Jasper) who also had a very good relationship both with our son and with the cats we had then.

Our son also learns so much by having animals around. It helps greatly with his understanding relationships as he does bond with the cats and dogs far more easily than people. One of the autistic symptoms relates to his inability to strike relationships and is not too comfortable in other peoples company. With our cats and dogs, he is so much more at ease, and holds many conversations with them, seemingly as if he gets an answer back.

It is important as well, as he sees the need to care for them, exercising them, feeding them, ensuring they have fresh water throughout the day, sensing when they are unwell or want to play. We go shopping at the supermarket and our son takes responsibility for reminding me to buy food and choosing something for them.

During this period I’m away for much of the day, Lady Bronte will play an important role – unbeknown to her – in ensuring our son remains focused on these things until I get home.

Animals are well documented as a form of assistance for many illnesses, disabilities and age and the relationship that is struck up, particularly with those with autism, can been very rewarding. Dogs and Horses in particular seem to have an ability to calm the anxieties of those with autism.

One eye on Winter!

One eye on Winter!

A potted garden for winter

In order to have something for our son to look out of the window onto is all important. Those sensory aspects of colour, smell, sound, and touch are something we try to provide all through the year.

As summer is now giving way to autumn, many flowers are seeing their last days and will be pruned back in readiness of their dormant weeks until they begin to bud again next year. Some, on the other hand are beginning to show new growth as they thrive on the colder weather that autumn and winter bring.

In our sons potted garden, we set out last year to pot up a combination of Cyclamen, and early spring flowering bulbs that will give colour from as early as October and run through in waves of different flowers in the same pot until April/May next year.

The Cyclamen have started with the green foliage and will soon develop crimson petals as the flowers come through. When it snows, the contrast between the crimson and the white of the snow is stunning. We have replicated this ‘potted’ garden idea in the garden as well and the naturalising capability of these plants will expand year after year. The crimson will be followed by yellow from dwarf daffodils, white snowdrops, and the purple fritillaries. As these colours begin to fade, the scent of the herb garden is coming into it’s own and many spring bulbs planted out in the garden.

It’s not just about the joy of gardening, which in itself is a means of therapy for myself, but also the way in which we can use these sensory aspects at times when our sons mind terrors need calming. One technique we use is to sit calmly and bring our discussion to ‘what three colours can you see?’ … it sounds simple, but in those few moments where focus is on looking for and identifying three colours, one after the other, helps to stop the random thoughts and fears of his mind and brings a single focus. Even for a few minutes, this act of bringing his mind under control eases the level of anxiety and fear. We build on this with identifying three sounds, the sound of water tricking in the pond, the sound of birdsong around the feeders, the sound of wind through the leaves and grasses, and when the herbs come through, scent is also used.

The garden is a wonderful healing place that takes a little time to develop, but the rewards are significant and endless.

Challenges …

Challenges …

Calming friends, inside and out …

How wonderful it would be if I could say to our son ‘I have to go out each day to complete Jury services for a couple of weeks’ … It seems simple enough and clear enough. Ok, understanding what happens when you are a member of a Jury may need some explaining, but the essence of being involved in something for a couple of weeks is, one would think, straightforward.

Sadly this is not the case – even as I write this article, I have to break off and rush to his aid as he collapses with yet another seizure – strangely, it’s not the seizures that are the main worry. Over thirty years, we have learned that they happen and what to do to ensure his safety until he recovers again. That can take minutes or days, depending on the seizure. The Autism is our biggest concern when changes happen such as being called for Jury service.

Our son needs, strict routine and consistency in all aspects of his life. It was said to us that when his maternal grandmother and grandfather passed away, this sent him into a depression that he will unlikely come out of, as he can’t process death and understanding of it is way beyond him. We continue to try to explain and have many books and specialists who are guiding us on how to explain it, but sadly our son’s learning disabilities prevent him from understanding comparisons, which most guides and advice use. To this end, we try and expose him to as much and a varied an experience as we can, so we can recall in picture form to try and enable understanding.

No matter how much we plan and prepare for this time when I am on Jury service, we know he won’t easily handle it. I will telephone as frequent as I can, I will be home each night (at least I hope so) and it will only be a two week period (again, I hope so) but he will slip into a very quiet and dark place as all he will see, is that I am leaving, just like his grandparents, just like his cousin who now lives abroad and it will take a while at the end of it to bring him round.

We did speak to the courts and my plea to be excused was disregarded as they say, my wife is here and we have other family members who can come in to support her. For me, this is another example of where people just don’t understand the effect on the mental wellbeing of others. I know the civic duty I am obliged to deliver (now the second time) but,  I’ll get in, get it done and get out again and hopefully pick up the pieces at home quickly and smoothly.

To aid this, we have been creating various aspects and environments to help my wife and our son remain distracted from my absence, not least of all ‘Lady Bronte’ our Parson Terrier who has developed great affection for our son and our garden with its ever increasing wildlife to attract his attention. We have placed some pots on the decking outside the living room window where our son like to sit and the butterflies visit with great frequency and our son and Lady Bronte watch from the dry warmth of indoors as they flutter around.


The frogs hop in

The frogs hop in

Hop into the garden

After the success of creating our Butterfly Garden, I was excited to find today that we have an abundance of frogs that have set up home with us too.

Slug eaters – they need to eat more – each night we walk Lady Bronte around the garden, she was attracted to movement deep in the Lavender walk borders. Needing to investigate, I went in search of what may have caught her attention and found them, at least eight of them all hoping over each other for protection as I uncovered their hideaway.

I have put in a small pond, but I have not seen any of these around it, but there is plenty of damp, shaded areas which they seem to love.

Our son is fascinated by them and I’m delighted they have arrived again – each year for five years now – and so our attempt at attracting wildlife is proving quite successful. Together, we have installed ‘frog homes’ that we can now check on and hopefully, we can take photographs together, look to identify them and watch them grow.