Quiet days

Quiet Time

Quiet Time

There are moments, and even whole days, when just sitting is all that we do. It usually follows an active day and time is then needed to sit, process and contemplate what we did through the earlier hours.

Our son has times like this, perhaps more than he used to! or have we just become more sensitive to his subtle changes? It doesn’t really matter. We are here alongside him as he works through this ‘quiet time’ at his own pace. Occasionally speaking, or questioning, but for the most part, quiet. Not answering our approaches to him, we know him well enough now to sense his need, even in the silence.Β  At times like this, we have learned to remain quiet ourselves, and just get on with our home based activities and hobbies, reading, processing pictures from earlier photo runs. We find we can’t go into the garden when he is like this and for his own safety, we need to be in the same room in case of a seizure or fall.

Over the years, we have built up a large collection of books, records and CD’s, DVD’s (and Cat’s πŸ™‚ ) and learned to use the internet reasonably well as an alternate to having to go out – just for times like this, when you don’t know until it happens, if you are going to be able to go out or not. Thank heavens for Internet grocery shopping and the reasonably successful way they manage it now.

These times do pass, more quickly now than they used to, and although we encourage and try to bring focus and objective throughout each of these days, we have learned not to push, and gradually his mood changes and he returns to his usual ways.

Our studies have taken us to more reading and discussions with authoritative sources, in the hope we can understand, and anticipate more as aspects of his Autism just seem so intense at the moment. Recently a Mental Health Practitioner asked him, “What makes you happy?” and there was no reply. Absolute silence. We know he is happy and we have real belly laughs from him and a desire to go certain places and meet certain people, and he is happy doing certain things such as his music, but we have to learn how to help focus on those happy times and how to help him recall them as easy as he does those sad and angry memories. Our photography project “My world, through my own eyes” is an attempt to support this by providing a means for him to recall what he did and saw – and even photographed himself. Other collages in his photo album is another way of capturing ‘happy’ moments so we can work on embedding these thoughts in his mind at the expense of the negative ones.

Tomorrow will be another day, probably happier and more interactive. We have plans. These plans are flexible by necessity, but they will add opportunity and experience of something new if we achieve them.

We were once told, that it is trial and error and will continue to be, as Autism is a lifelong challenge that faces us, and our son, but together, we will find that way to make his life as fulfilling as we can.

Time …. and patience

Allow time and be patient

Allow time and be patient

When times are good, full of laughter and enthusiastically taking part in a variety of activities, it is easy to forget, that this does not mean his mind terrors and anxieties have been cured. The slightest of things can still be the cause of a meltdown, and sadly, succumbing to complacency we fail to recognise the torment we cause with too much, too soon, and forgetting the rules and routines we must live by.

Autism is a condition that is lifelong, and recent difficulties have reminded us of that fact as we once again allow time, and provide patience and support to ease his troubled and frightened mind.

It can be a difficult journey, and one where, as parents we must not let our guard down and continue to choose the right path to follow, even if it is the quieter path, and the results will be greater for us all.

For now, a couple of days of calm, in the safety of home, doing the things he is familiar with, and we will recover once again. πŸ™‚

Yes, we can!

My world, through my own eyes

My world, through my own eyes

As a parent of a son with disabilities, I often wonder what interests he may develop, or activities he may like to be involved with. We also wonder, what can he manage, with the complex multiple disabilities he has to contend with.

Having these conditions from birth, our son is unaware of how it would be if he were ‘able bodied’ as he has not experienced life that way. He is ‘normal’ for him, and happy in his own way. Our role as parents and guardians, is to ensure that he sees and experiences as much as he can, and as wide a range of stimuli as possible. With this in mind, it is important that we understand, and our son understands, what he doesn’t enjoy, equally as much as that which he does. It gives a valuable lesson in likes and dislikes as much as stimulating the mind.

One of the activities our son has watched as I develop my own hobby, is photography. We use the pictures to create social stories, memory boards and reminders of things we have done, and places we have seen. Increasingly our son has shown an interest in ‘telling’ me what pictures to take.for him. The idea grew to set up his own camera, together with a tripod holding his own camera in a position that he can use from his wheelchair and operate the shutter all with one hand.

This photography kit comes with us each time we go out now as well as the much loved ‘picnic’ and now has his little piece of independence to take his own pictures. I leave these pretty much as captured and just crop and title them so he can use these images to create his own social stories.

Β It is another lesson for me that ‘there is always a way’ and enabled to share in an interest together with me. It may not last, but for now, it encourages him to get outdoors into the fresh air, and to learn the basics of a new skill. Other than in this blog, I’m looking to see if I can find somewhere for his work to be used (once he has become more prolific) so he feels there is also a greater purpose behind it.

For those contacts who follow my own work on ‘Flickr’ I owe a huge debt of gratitude, for getting behind our sons work and giving him the encouragement to keep it up.

I will in time create a gallery based on his work to share his journey with you here.

Crying in the rain …

I do my crying in the rain ...

I do my crying in the rain …

Beautiful things, such as a blooming rose, can hold raindrops that appear as tears. They can also appear as jewels, enhancing the flowers appearance even more as they sparkle.

I have shed many a tear over the last couple of years as we have watched our son struggle through the terrors that have ripped through his mind and the frustrations we have encountered just trying to get through the day. I hide the way I feel, as to see such tears would cause him further distress as he struggles to understand why.

Today, I had to hide my face again, not through tears of distress or sadness, but with bursting pride, that I actually wanted to shout out loud and rejoice.

Today we returned to a venue where we have had to stay away from for a long time. A social lounge, provided for those with additional needs to access with their carers, and share a coffee or lunch and to be able to network with friends and people also with disabilities . We had avoided it because of the noise, the crowds, the hustle and bustle, which were all affecting our sons sensitivities in such a negative way. But today he asked to go and visit again.

We planned to drop in for a coffee (actually it was tea) and then leave, but he was greeted so friendly by those organising the venue and some of those users who he knows, stressing they had missed him, and delighted to see him, we ended up stopping for lunch and endless conversations with people who just wanted to catch up.

We were armed with sound blocking headphones (just in case) and planned a wheelchair ready exit (just in case) music had been lowered just for him and I have to admit to being surprised, yet so delighted these interventions were not needed and our son initiated conversations, ordering his meal and paying for it, all unprompted and with such enthusiasm. We stayed for a few hours and left smiling.

Maybe it was just to see him enjoy himself, maybe it was just a relief that we hadn’t encounter a similar situation to the last event we attended, but tears just ran down my face as today I saw signs of our sons old character return.

Some things we achieve may seem so small and to may, insignificant, but there are those people out there, who for some do find small things like this a huge challenge. All it takes is a little consideration and understanding and the world can change for a person and their wellbeing is suddenly given such a boost.

Thank you to all those involved, whether or not you know it, you have changed the world for our son today, and that is priceless πŸ™‚


All it takes is a little patience

All it takes is a little patience

In the summer of 2012, the Paralympics in London were considered to be a significant springboard for the understanding of disability, and the genuine desire for inclusive activity, be it sport or business or in fact anything where a little consideration and reasonable adjustment is required. We had a legacy from those games, which brought so much to so many through this event.

In the summer of 2016, I come to wonder what happened from then to now, and question the attitudes, once seen as so important, to one today where we find the return of ignorance and even resentment towards those with a disability.

It pains me greatly when I see or hear those with a disability ‘demanding’ this and ‘demanding’ that and I think how much more they would achieve by courtesy and politeness. This attitude is gathering more and more resentment and frankly, I can see why.

However, I recently attended an event. It was a pre-booked event in support of Austism. As my son has Autism – diagnosed at age 29 – we were looking for all the help, information and support we could find. I arrived at the venue with my son, who is also a wheelchair user to a mass of people, all milling about going about their business, even only half an hour after opening! The event was clearly popular and had many speakers and businesses promoting their particular specialism and I must applaud the organisers for pulling this together. Many of those who attended, were obviously teachers, business providers, local authorities as well as parents and even people with Autism themselves. As we tried to wheel around the venue, we were tutted at, cursed for taking up space argued with and insulted and just blocked from getting places we needed to.

Frankly, I was appalled that so many people, involved with and attending an event in support of disability could act and behave so easily in this way.

In that moment, I could understand why those disabled do ‘Demand’, as on this day being courteous was achieving nothing and we were made to feel so insignificant among these so called ‘professionals’ who will no doubt return to their business and profess a caring and supportive organisation.

The legacy of understanding and tolerance from 2012 is well and truly lost and clearly there is a significant erosion of the goodwill, and in some cases obligations to support disabled in an inclusive society.

Those who know me will know that it is not my style to ‘rant’, but I was hurt by this experience, and my son could not enjoy what should have been finding out new things and meeting new people, and I had to bring him out before he had a meltdown. I fear for his future without us as his Parent Carers and need to find a way to recapture a lost dream of that inclusive society, without the need to ‘just do it ourselves’.

My message to those who read this and have experienced anything similar is not to give in to the same behaviours, look for those aspects that works and then refocus your energies into trying to motivate change. For example, this was an excellent event in itself, and I am in dialogue now suggesting that next time they have a couple of hours of ‘limited admittance’ or ‘wheelchair only’ periods, like some other venues, which would have avoided the conflict we experienced. If I get a positive response, or even a response, I will consider this a success.

Don’t stop me now!

Don't stop me now ....

Don’t stop me now ….

There have been, as you will have gathered, when even being involved in a single activity has proven to be extremely problematic and raised levels of anxiety significantly to prevent them happening.

Through Marc’s journey of recovery we had a real success today, in that we visited our Town Hall where a recently refurbished restaurant allowed us to have ‘brunch’ – we find that to be ahead of the lunchtime crowds helps an event like this to be accepted more easily and peacefully. The room, was quiet, spacious, sun was shining in through the windows, very attentive and courteous waiters and waitresses who just seemed to give Marc that special attention that he responded so well to, even though they do not know him. It was a huge success and more importantly, good memories for when we talk about going back – I try and take photographs as we go around so we can relate to them in our preparations, sadly I forgot my camera on this visit!

From here, we would normally return to the peace and security of home, given the ability to process only one thing at once. Today however we were surprised, yet delighted, when Marc asked to go to his favourite park and sit a while in the sun. One thing we always do, is to respond to his suggestions like this, and build upon his own desire to do things, or go places, and actively encourage this with him.

The trip to the park resulted in an hours adventure, watching people walking dogs, eating picnics – we had already eaten ‘brunch’ so I was excused not having a picnic with us this time – gardeners tending the flower beds and bowling green, and then we completed a half hours wheel-walk along tree lined lanes and beautifully tarmacked pathways around a lake and the iconic fountain.

Tomorrow we are joining a walkers group who have specifically adapted it for our using a wheelchair – another great success if we can achieve it – and this will give Marc an opportunity to mix with others (even though I will be there, pushing) with a focus on a mindfulness theme. I believe the group will be small and last for a couple of hours. Story to follow tomorrow, all being well.

This really is a sense of ‘Don’t stop me now, I’m having a good time ….’Β  πŸ™‚

Just the three of us

Just the three of us

Just the three of us

Sometimes, only sometimes, we feel that we are all there is. In truth, there are times when we realised that we are being kept at arms length. Family do not engage as you may think they ought to, and once close friends have a habit of finding something else they are doing when we try to meet with them.

At first, we worried about this as our isolation became quite apparent. It is easy to hold a little bitterness to these ‘fair weather friends and family’ but, as the years have passed, we realise that there is a significant amount of fear there. Fear of not knowing what to say, or do, when we are with them. I wouldn’t, for one minute hold this against them. Before our son was born, I admit that I too was unaware of the enormity of disability. We too have been fearful through the years, not knowing what to do, what to say. Trying to work it out for ourselves.

Over time, our sons self esteem and well being has been seriously impacted and there have been times when it has been incredibly difficult to care and support someone who is so low, fearful and angry, yet, so dependent on us. Through these dark times, we took the time lift our heads and to look about, to see who was out there who was not afraid or prejudicial, and understood what we were feeling, even if they didn’t know the answers, but would not turn their backs. We looked for those who could help us by listening and supporting, suggesting aspects of care and treatment they have experienced elsewhere which may work for us or just signposting us to where help was.

Friends come from so many unexpected places, some directly, some indirectly. As parent carers, those who engage with us, bring us the strength to carry on and to keep things in perspective. We no longer feel that isolation, beginning to feel worthwhile, we are stronger in supporting our son. There are some friends who now engage with our son as well, directly and indirectly, and have played a very major part in helping him come out of that darkness that consumed him and have confidence to face the world without quite as much fear and anxiety as before. Personally, I thank friends on Flickr – the photo sharing web site – who have helped all of us through difficult days with comment and friendship from around the world, some have begun to know us quite well and are responsible for bringing a smile to our sons face again …. priceless!

Just like the ‘Bleeding Heart’ image, we once thought there was ‘just the three of us’. But in pulling back, we realise that the plant is adorned with many flowers, just like us, with trials and tribulations of their own, but shine through to brighten the day, unconditionally. Don’t stay alone, reach out for those who can help and support you too if needed. There is a world full of disability confident people out there, who understand and can share.

Breaking through the darkness

Breaking through the darkness

Thank you all, so much πŸ™‚

A mind without Terrors

No terrors to bar his journey

No terrors to bar his journey

We looked back over the last two years, when every day seemed to be a day that Marc lived a nightmare, of terrors, fears and meltdowns.

The last six to eight months have been a revelation to us as we learned that Autism could be a condition not diagnosed and that we weren’t treating Epilepsy in isolation. Reading, studying, questioning and networking revealed remarkable aspects of this condition that we found we were kicking ourselves over not having seen the signs before.

The journey we embarked upon two years ago was based upon a belief that his seizures were getting worse and more frequent. In truth, they were, but on reflection, we are beginning to believe these were as a result of a serious increase in anxiety and Marc was (we now know) showing all the signs of ‘Non-Epileptic Attack Disorder’

Our story has moved on, and from his fear of leaving home and getting outside meeting different people, keeping him very much home bound, we have now removed some of the medication, prescribed to counter what we now believe to be the wrong cause. The improved change is as remarkable as the sudden decline all those months ago.

Marc is outdoors once again, showing interest in most things he sees and feels, and chats with most people we pass, with a ‘good-morning’ or ‘good afternoon’ as he once did.

We realise the steps are small, and that he continues to have many challenges to overcome, but his mind no longer has the terrors it once did and this allows him to look expectantly to the future once again and respond so much better to our interventions and support. Of course, we also understand the emotional impact his mind was unable to process all that time ago, from such things as family bereavement, and our own journey has allowed us to understand this better so we can position things in a far more controlled way to help him through it.

Not totally at peace, but a mind without terrors is far more peaceful that it was πŸ™‚

Vehicle selection

Which chair to choose today

Which chair to choose today

It’s like ‘Top Gear’ only with wheelchairs! A top of the range Power Chair – max speed 6 x miles per hour. Maximum distance around 6 x miles depending upon terrain (we can push 8 x miles if we stay on the flat) Joystick controlled, dual battery and even a freewheel option. Self propelled – or in our case, assisted wheel chair, 24 inch puncture proof tyres, foot rests and adjustable arm rests. Maximum speed 4 x miles per hour on a flat surface, uphill …… not very fast at all πŸ™‚ and our new addition dual wheel power assisted self propelled wheel chair – The Excel G-lite Pro – with ultra lite frame, easy snap on 24 inch wheels with anti puncture tyres. Assistant controlled motor with maximum speed of 6 x miles per hour (if jogging, and not for very long!)

Does this sound extravagant? I hope not. Marc has a chair now for different situations and importantly the range helps us, as parent carers, to keep him active as we get older and tire quicker.

The power chair allows Marc his complete independence, as he drives this himself. We need to be on hand in case he has a seizure and loses control and drives off the road. The trouble with this is that it is phenomenally heavy, even with the batteries taken off so we are restricted getting it in and out of the car to go out anywhere for a walk – this we use on the doorstep and thank heavens we chose somewhere near the country so we can just wander out of the front door along country lanes. We have our eye on the new ‘Foldalite Pro’ a new design with lithium batteries that can be carried in one hand while folding down to no more than a transit chair. Expensive, but watch this space.

The new G-lite Pro offers us the control of an assistance chair with the added power of the power chair and as it folds away nicely its idea to throw in the car with the picnic hamper and we can once again enjoy the wheel-walks even with a gradient without becoming exhausted pushing.

All these are once again essential tools as Marc begins to regain his interest in activities and going places, we have joined a local mindfulness walking group with ‘Mind’ to help him build his interaction with people ‘who understand’ and we hope build some friendships along the way. They don’t focus on wheelchair walks themselves, and are pleased that I will be joining with Marc as we can bring an added value dimension to their group, and maybe, we could, in time, become volunteer walk leaders ourselves for them. All adding great information for the wheel-walking web pages.

Which chair did he choose? …. the new one of course πŸ™‚


Contemplating the future

Contemplating the future

Contemplating a new schedule of activities is a slow process. No change can be too sudden, nor too extreme, or we will not implement the changes successfully. Having had the success of withdrawing certain medication, our hope is that a greater acceptance and increased desire to get out and about will become natural once again for Marc.

Taking inspiration from our cats – in particular Mr Lockwood – we spend time talking it through, recalling the fun times we once had and try to set a healthy anticipation ahead of stepping out.

Yesterday was not so good. A level of anxiety built up through the day, worrying about crowds, noise, cars. We addressed each one. Talked it through, and explained what we would do to enjoy the outing. We checked our grab-bag, made sure the headphones and iPod were packed (a new technique we have introduced in case of noise) and calm returned towards the end of the day.

This morning, with the exception of repeatedly asking me if I was “definitely coming too” (to which I repeatedly replied that I was. This is still a reaction from family bereavement over three years ago, where Marc still struggles to understand and accept death, and fears we may not ‘come back’ if we are not actually with him) we were still pleased to set off. First stop was an early cup of coffee at the social lounge for special needs patrons and their carers. The lady who runs it, was good enough to understand Marc’s particular sensitivities and turned the piped music down. There was only half a dozen people there as we were so early, but ideal to encourage him to go back to this once loved place. After an hour, others started arriving and it was very noticeable that Marc’s mood was changing and his body language suggested anxiousness creeping in.

A service provider asked Marc ‘what would you like to do Marc’ …… nothing! Understanding what I now do, this had posed a question that just raised confusion totally. You can’t ask someone (at least some) with Autism an open question like this as it can not be processed and the ‘fight or flight’ response sets in, and a meltdown could follow out of fear of not knowing, or understanding what had been asked and how to reply.

Delighted by what I have learned, – copious amount of reading and talking with professionals in this area – and back up plans Marc and I had discussed previously (though likely forgotten now by Marc) I was able to take charge and told Marc, “we are now going to the Park and sit on the bench to watch the fountain” getting up as I was talking, Marc followed my example and although we left the social lounge without him saying goodbye to those he knew, we left, went to the park and sat in the sun watching the world go by.

The open space, the quietness of the largely quiet park – and a cup of tea from the cafe – all helped calm his fears and he began chatting happily again.

It was great to get out again, it is totally confining to care for someone with Autism without proper and professional support. I have started ‘a parents journal‘ that captures some of the feelings we as Marc’s Mum and Dad go through, and our approach to his care and support as we walk this path less traveled. It may be darker in parts, as I share our ups and downs as parents, but I hope it will provide those in a similar situation, something they can relate to and hopefully take strength from, realising they are not alone

We have engaged with ‘Mind’ a charity that supports those with Mental Health issues and in particular because they organise ‘mindfulness’ walks. They have been very good to organise wheelchair friendly routes when Marc and I turn up. To this end, we have a new Wheelchair being delivered tomorrow – with added drive wheel and motor to help me push up hills (there are places that the power chair is inappropriate as Marc could steer off the path if he has a seizure, so we save that for wide open spaces) – Β  The park where we sat today is where one of these walks takes place, the familiarisation will make the walk so much easier when we join them, rather than it being completely new.

Our new schedule is slowly taking shape and the door is opening πŸ™‚