Browsed by
Author: Paul

Paul Fraser is a parent carer with his wife, to their adult son, who has multiple disabilities and together they strive to enable his access to an inclusive society with experiences as wide as possible and support others in similar situations by sharing their successes, and even failures so others may avoid pitfalls they found
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.

Blinkered

Blinkered

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.

Bumble-Bees

Bumble-Bees

Bumble Bees

As we walk our various themed garden areas, we spend time along our Butterfly Garden border. Though fast coming to the end of the butterfly season, they are still attracted to the buddleia we have growing here and joining in the enjoyment of the sunshine is also a number of bumble-bees and wasps.

Very quick on the eye, they do keep us entertained for several minutes, watching them dart from one flower to another.

This garden has surprised us by the number of visitors we have attracted this year and probably does not need too much, other than a little tidying up, doing to it during the winter season. At this point, the evergreen holly and low box hedge will reappear as the summer flowers die back, but allowing us to continue to enjoy this are of the garden.

The Butterfly garden border

A little structural work to insert an archway across the gravel pathway, separating the Butterfly garden from the Rose garden, via this Rose walk and renew the pebble pond at the end of the path, will be all we need to do.

August is a good month for colour in this garden, with Salvia, Verbena, Roses, Buddleia, Weigela, Nepeta and Crocosmia all in beautiful flower and with frequent deadheading and pruning, we are looking at prolonging the season as long as we can and from early flowering Daffodils, this garden offers year round interest and opportunities for photographs through the year.

As well as bees and wasps, this is a haven for birds. We have feeders to the end of the border, but these flowers attract the insects that the birds, particularly small ones such as blue tits, wrens, sparrows (when they turn up) nuthatch and others, love to feed on in addition to the seed we put out.

So our son can make the most of this area, I’m putting a bench adjacent to this border and the rose garden and overlooking the pebble pond so we can sit a while and watch, listen and smell the sights and sounds while taking in the various scents … oh and sharing a flask of coffee!

New adoption

New adoption

Miss Moneypenny

Miss Moneypenny! This lady is fourteen years old and is awaiting a Thyroidectomy operation in the coming week or two, but when she has recovered, she will be living her remaining years with us. Our latest adoption from the RSPCA.

Since we were married, we have always had at least one cat with us, usually two or three and of course a dog.

Miss Moneypenny will be joining Lady Bronte with us soon and both will help our son understand responsibility, caring and also both give and receive the love that for some reason, animals just know how to give.

 

Our feelgood garden

Our feelgood garden

A new visitor …

You probably already know that I love our garden and that our son takes great comfort from being within it. One of the areas we have been trying to develop is our Butterfly Garden, an area developed with plants and flowers that attract butterfly’s in the hope that when we sit and spend time there, we may get visited by a passing butterfly that may actually settle on us and so delighting our son’s experience in the garden.

Constructing this area over two or three years, the best we had was a lone small cabbage white, and off he flew. This year however we saw a lone red admiral arrive too. Today, as the sun shone, I was able to count at least 15 red admiral butterflies in the garden at any one time and which spent all day with us and amongst the plants. including the other varieties, we must have had a consistent two dozen or more throughout today.

We have had the small white, the red admiral, the peacock and this little chap who I am given to believe is the ‘comma’ – if it is, it is a real success as they don’t normally travel as far north as where we are.

My job now is to make sure our garden remains an attraction to the butterfly and that they return each year. I need to create more plants and drinking stations for them and an area within this garden to sit where we can just rest awhile and wait for them to land on us – and of course take a photograph or two (ok, maybe more)

I love it when a plan comes together 🙂

Nobody knows …

Nobody knows …

Come, sit a while …

“I understand” … “It will be fine” … “That won’t be a problem” … etc, etc, etc …. all good intended and positive comments that we are assured by those who interact with us. Then we get, “your leaving so soon” … “But he’s enjoying himself” … “you can’t just go” … and so on!

The reality is, ‘nobody knows’ what it’s like living with someone with a disability unless you actually do. The additional care and attention required is enormous and though living as normal a life as possible is always the aim, it simply can’t be that simple.

We are reminded of this as we are attending a family event, it’s great that we are all included, but from the start we face, no parking facilities, so a lengthy wheelchair walk to get to the venue. Then, there was no provision for wheelchair and grab-bag storage. Disabled toilets are provided, but only just large enough to get a wheelchair and user in – no assistant space unless the door is left open.

The event is split across two floors, one has steps to it, no ramp! Then there is the flashing lights, the loud music, even a choice less menu, all leads to the event, becoming a nightmare.

Leaving early raises comments of ‘disrespectful’ … ‘you have to stop until the end’ etc

The upsetting part of all this, is that it is family. Family who we would just love would say ‘don’t worry, this is how we will provide for it’ and that they understand we need to leave early, but appreciate our making the effort to attend for part of it. But that doesn’t come ….

The world, even amongst family, is becoming less and less inclusive and sadly less tolerant to those who need a little extra support and understanding. It makes me sad, but also makes my blood boil when you see friends and family step away, losing contact and increasingly distance themselves from us because we can’t fit into their world the way they want us to.

We learn to depend upon ourselves and create a world appropriate for us and our needs, but at times this smaller world knocks your confidence and you can understand how easily those with additional needs become isolated, and become an increasing ‘burden’ to society as simple provisions are not made.