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
Alone

Alone

Some days, only some, the difficulties that our son experiences seem to extend their reach to engulf others.

Today, as I walked alone through the park while our son was having a coffee brunch at the social lounge he attends, I was thinking about the report we received recently from his Psychiatrist. Painful to read, it suggested that he was losing interest and enthusiasm of life, fearful of virtually everything and incapable of making the choices that would be expected of someone of his age, trying to establish himself in this world.

His Psychiatrist drew attention to how his outlook is worsening and that activities he was once involved with, hold no interest for him now.

Our dog, Bronte, looks at me. Deep dark eyes that seem to understand my thoughts but can offer nothing but the power of distraction as she wants to fetch and run after her ball.

As a father, I had once thought about kicking a football together, playing catch, casting a line fishing, maybe even walking together coast to coast, the Pennine Way or three peaks. Even watching him finding a partner. We realised early on this was never going to happen and that our time together would be focused on other, more basic things. We have known from the time he was born, that his life expectancy will be shortened. After thirty years, he has already surpassed medical expectations, and we have blessed every day. Reading this report, one of several that have identified his increasing difficulties, I wonder as I walk alongside the boating lake, are we heading into a new phase in his life, one that is not as fulfilling as his previous challenging years.

Am I up to it? can I effectively support our son, my wife, with continued enthusiasm and excitement, when it seems everything we do for him is met with disinterest and refusal, turning increasingly uncommunicative. Maintaining self motivation is essential, creating new ideas to stimulate, being prepared to be flexible with these plans and to brush off rejection and complaint. They don’t matter.

We complete our walk and return to the social lounge to collect our son. I meet with the service providers who tell me “he was fine, he’s interacted and enjoyed the company around him” ….. looking though the window, I see our son sat at a table, alone. His head bowed and face expressionless hands on his lap and nothing like interaction going on. As I enter the room, there is no response until I sit directly in front of him and quietly say, “lets go home son” and I get the first response as his head raises marginally and sad eyes look towards me. He moves to get out of his chair and we head home. The remaining hours of the day were quiet and unresponsive. The words of his Psychiatrist continue to haunt me and I can only take comfort in the fact that my presence does appear to reassure and comfort him and at times we do achieve good things together.

What the future holds for us all I do not know, I’m certain we will be walking parks, sometimes together, sometimes alone.

Park walk

Park walk

Full of anticipation …

As we got up to the radio alarm with the weather forecast suggesting a heat wave for the next few weeks, and indeed the sun was shining through the windows, we thought ‘ Park walk’ 🙂 It is not that pleasant sitting in a wheelchair when it’s windy or raining, but when the sun shines, it can be quite a treat.

This event had been planned several days ago so that no sudden changes would prevent it from being a day to look forward to and we had looked at the long range weather to select the best day. You may have read about our pictorial calendar which schedules activities in some detail to keep our son’s mind terrors at bay. We go through the usual preparations of checking the grab bag, harness and lead for Miss Bronte our dog and load up the wheelchair into the car and we set off, all full of anticipation.

Arriving at the parks car park, I’m conscious that getting out of the car is probably close to the half hour that it takes us to get in. I keep everyone in the car while I pull out and set up the wheelchair, select our hat’s for the walk (woolly for when it’s windy and cold, baseball for sunny with cloud and the full brimmed for all round protection in a sunny and cloudless sky) today, we (our son) had his baseball cap. Helping him from the car to the wheelchair I make sure brakes are on, chair belt is adjusted and secure and then I get Miss Bronte into her extending lead and link her to the wheelchair too.  She is very good at walking to heel, but I need to give her a little extra lead as walking to ‘wheel’ is a new concept to her and I have to mind those doggy toes don’t go under the wheels as she crosses in excitement from left to right and back again, sniffing out all the doggy messages left on their very own doggy social media – it seems like every tree, post or grass verge has some message there!

Calling for the ‘Green Man’

 

Locking the car, we are ready for actually getting into the park. A short walk from the car park to the controlled crossing via an access ramp our local authority is very good in providing and our son presses the traffic control button to summon ‘the green man’ – when he appears we can safely cross.

I always remember we spent some time in Blackpool a few years ago and as we always do, we stopped at the crossing and told our son “wait for the green man” This lady alongside us was clearly fascinated by what she overheard and as we repeated the “wait for the green man” she told us that at initially she thought there was going to be someone turn up in fancy dress of some sort and went on to say that she had never thought of the crossing in such a way. We began chatting and it made us realise just how much detail we do actually think about and explain as we guide our son through life’s everyday aspects that perhaps many of us just take so much for granted and no longer think about.

Thanks to the ‘Green Man’ getting us safely across the road we eventually arrive in the park and the tree-lined trails and pathways open up in front of us.

Tree trails in the park

This particular park (Queens Park, in Heywood Rochdale) has been a favourite of ours for many years. It is always well maintained and boasts the usual swings and open fields as well as bowling, but also a boating lake – sadly without the boats now – skateboarding park and lovely landscaping. For us, the pathways make it. Tarmac surface with only gradual gradients, which make it ideal to walk around with a wheelchair.

Covering the usual circuit – our son likes the routine, we stop a while at the bowling green where the groundsmen are preparing the surface for the coming season. Empty today, but soon it will be full of crown green bowlers.

Groundsman

There is a cafe within this park, those who know us well will know we always plan a wheel walk around a cafe or a picnic. Recently closed in preparation for new management, I’m delighted to say, it has now reopened and trading well and we take the opportunity to indulge in a short coffee break and a toasted sandwich. The added benefit of it being dog-friendly too, but today, we stay outside in the sunlight and watch the world go by for a short while.

Drinks finished and our toasties are eaten, we dispose of our rubbish and head back to the car park for the return home. It can take almost as long to prepare to come out and pack up again as we spend actually outside walking, but that is all part and parcel of the event. The important thing is that we made it out with an enthusiastic start and completed the walk with ongoing interest.

 

Cracking a smile

All in all, a successful day with a smile just breaking out. A Social Story now being developed as a memory jogger and discussion point to aid a positive return at some point soon.

A short wheel walk

A short wheel walk

We agreed that we would venture on a short wheel walk today. Trying to build up confidence and enthusiasm for getting outdoors again. The sun shone – before it snowed, yes we had snow again. though it did not last long and it didn’t stick, but we were pleased to be back in the car with our flask of coffee just as it started.

Still niggled by the almost casual reference to taking anti-depressants to help our son by his Psychiatrist last week, I am convinced that by using all the techniques and opportunities of mindfulness practices, we will help him better, given his already high dosage of anti-epileptic medication, and other complex issues. Please don’t think I am ignoring sound medical advice, and I certainly would not suggest that, but in conjunction with our son’s Psychiatrist and Neurologist, we are agreed to try all approaches to ease his anxiety, depression and seizures.

Social storiesTM were created by Carol Gray in 1991. They are short descriptions of a particular situation, event or activity, which include specific information about what to expect in that situation and why. I have been taking photographs of our days out for some time and cataloguing them in a large photo album as a reference to a previous event to help our son recall what we did and to support understanding with what we will do next time we do it.

Adding words to these pictures as developed by Carol Gray in a form of ‘Social Story’ is an idea we have looked at to read a consistent set of words each time we look through the photographs. I wanted to try and put in those words that our son speaks as we undertake the activity in the hope this will become more ‘real’ for him, though inevitably I have had to supplement this with others too.

It made sense to me to try and build a library within this blog so that others may take inspiration and replicate in their own way if they feel there is a benefit. I would strong urge reading about Social StoriesTM through this link and the National Autistic Society web pages for further advice and guidance.

Our day started at an existing written up wheel walk, at Hollingworth Lake in Littleborough, Rochdale. We woke early (in anticipation, which was a good start) got washed and dressed and had our breakfast. The routine of packing a ‘grab-bag’  – for medical and other essentials – a choice of hats (it was freezing even though the sun was shining) and winter coat. Made up our sandwiches and flask – our son will only drink coffee from a flask, he won’t touch tea, but will do the reverse at home and never touch coffee! just one of those personal habits – and we are ready to go. Wheelchair in the car, dog secured to his seatbelt harness and off we go.

1 – Activity story – Heading out

Parked up, we transfer into the wheelchair and a lovely smell of chips frying greet our senses, all of a sudden a cheese sandwich doesn’t sound that exciting (note for next time!) I am keen that our son tries to capture pictures himself as we travel around. I find it helps his recollection and sense of being in control, though on this trip I was not able to take the tripod with us so he tried freehand, but a bridge camera with one hand is not the easiest thing to operate. Never-the-less our first picture is our sons as we ‘head out on the (wheel walking) highway’.

“It’s freezing” our son shouts out and wrapped in his heavy coat and woolly hat, I just knew this walk would be short. We were, however, outdoors and this walk was going to last as long as it was, and however far we got, it was a success. This is a new walk for our dog, Bronte, and she was being kept on her lead today. She has a great nature and only ten months old, full of excitement and curiosity. Gets on well with most other dogs we have met, but when I’m in charge of the wheelchair as well, particularly alongside a lake, full attention is needed and I can’t be chasing after a terrier who has just seen something of interest in an adjoining field. Walking to heel is one thing though, walking to ‘wheel’ took a little longer to master and I needed to be careful not to trap paws. There is one thing about this particular walk, or maybe it’s just the area, but everyone and I mean everyone we passed, said good morning or hello to us. Even the man on horseback tipped his cap to us.

2 – Activity story – Blossom trail

This walk started with a beautiful cherry blossom tree, a beautiful reminder that we were well and truly into spring and we spent a little while talking about the colour, picked some to see if we could smell any perfume and watched as the breeze was already blowing some of the blossom clusters into the blue water of the lake. Bronte took advantage of an early Pit stop in the grass verge and our path lay ahead of us.

This is a favourite walk for many people. We passed lone individuals, power walkers, mums and couples with prams, pushchairs and toddlers. Dog walkers, cyclists, runners and also carers with their charges and horse riders. Many people having the same idea as ourselves. Taking in the fresh air and enjoying this beautiful country park.

3 – Activity story – A moments contemplation

At a conveniently placed bench, we take a moment. Sheltered from the biting wind to talk. It’s not that we haven’t talked all the way to this point, but all of a sudden, the silence was deafening and I knew something was wrong. Twenty minutes into our walk, I had already checked for headaches, but asking again, no, it wasn’t that. Is he too cold? No, it wasn’t that. “I’m alright” he tells me but clearly he’s not and increasingly I can tell the signs that we are heading towards a meltdown. Trying to retain as much enthusiasm as I could, I encouraged him to agree to a little further and set off, Bronte wondering why we had even stopped as she was excitedly checking of the scent off every place marked along the way.

Experience told me that something had been smelled, or seen, or heard, or felt that had triggered thoughts which were now causing terrors this walk was meant to dispel. The key was to be supportive, talking calmly and continually but knowing I was talking to myself and that it was only the sound of my voice that would be heard, not the words. We walk on to the next corner and decide that although the lane ahead is a lovely stretch with wonderful scenery to savour. Heading back was the only sensible course of action. I look down this lane, almost longingly given we cannot go down it and it brings to mind the title of a book by Ellen Notbohm – ‘Postcards from the road less travelled’  there are times when my wife and I think we are always on this road alone, travelling where others do not go, or even know where it is.

4 – Activity story – A road less travelled

We retrace our steps and after another twenty minutes we are back in the car park. Getting our son out of the wheelchair and into the car can take a surprisingly long time, or so it seems, I’m sure it’s only minutes, but putting the brakes on, undoing to safety harness, lifting the footplates, raising him up and across to the car seat, swing his legs in and make sure he is comfortable seems to take an age, longer as it starts to snow at this point! With Bronte secure and the wheelchair collapsed and put in the boot, I recover the ever ready flask of coffee and sandwich – still smelling chips in the air – after a while, the silence gives way to a few words. “I have enjoyed it” “I said we should have had chips” and then “Do you love me?”  ‘That’s good’ ‘I know, maybe next time’ and ‘Of course I love you’ I answer in turn to each. Of course, there is no eye contact, he’s staring at the dashboard of the car, not even out of the window at a small marina where yachts are being readied for the water.

“Are you with me tomorrow?” was the next question and immediately all became clear. We have an appointment with our sons Speech and Language Therapist tomorrow and I had explained earlier in our walk that we would need to be up and dressed early in the morning to get to the meeting on time. This seemingly innocent piece of information was received with unfathomable depths of despair and fear as he struggled to process what this meant. We were at the lake today and to talk about tomorrow, today, about something he struggled with last time, was just too much. Meltdown!

I’m delighted to say that as we look out of the window at home, as the snow falls, we have again worked through the Speech and Language Therapy meeting and we have also worked our way through the ‘communication passport’ and ‘Talking Mat’ again that we have put together, together and he is now more comfortable with it.

The short walk today was a success, we managed to get out with an initial enthusiasm, we are talking about ‘next time’ which is a success – often we will get “I’m not doing that again” – but he is asking for a ‘chippy’ dinner to go with his picnic and to sit on the picnic benches rather than sit in the car too 🙂

Roll on sunny warmer days!

Our Activity, or Social Story is simplified to key points

  • Get up in the morning and ready by 10:00am
  • Pack the car with Grab Bag and Wheelchair
  • Make our Picnic lunch
  • Set off to the lake by 10:30am
  • Park the car and get into the wheelchair
  • Walk round the lake to the café and say ‘Good-morning’ to everyone we pass
  • After coffee, head back to the car, pack up and head home

I don’t yet have a photograph of every stage, but this will be developed

 

Self identity

Self identity

Full of heart

A visit to a Psychiatrist with our son left us with many questions and uncertainties and I’m not too certain of the value of the visit to us.

The line of questioning was met by our son with a blank expression. Not understanding what was being asked of him, causing him to withdraw into a silent world, showing no interest and so I was responding on his behalf.

We were told that our son is extremely anxious and depressed and that we should consider anti-depressant medication for him – in conjunction with his Neurologist and his anti-epileptic medication – I’m not so sure! One valuable opinion we were given, was that our son will be trying to establish himself and forge his own identity as anyone would, or does and that he will be frustrated by his inability to express himself emotionally in such a way to be understood. It was suggested that we ‘listen’ more to what he says and that we should respect his reluctance to do things or go places as him saying ‘no’ and allow him not to, as that is his choice.

Experience has shown us that our son will very quickly get into a routine of ‘not doing’ and ‘not going’ and instead he finds his comfort from just sitting and experiencing very little and not looking for more that life has to offer, his world becomes that which is immediately in from of him.

We are now going into further debates around increasing medication which hopefully will control his seizures, but there will be side effects, not least of all increased lethargy, which will make engaging the world outdoors more difficult that it is already, but there is a concern about the damage uncontrolled seizures are having if we do nothing.

Helping our son overcome his anxiety and depression is essential as it is life restricting for him and challenging to our family unit. With respect to our Psychiatrist’s comments, I do retain a belief that having an interest in activity and ‘places’ is paramount to his recovery, giving him something to see and focus on and if handled correctly, creating happy memories rather than accepting his resistance. I do need to consider and reconsider, and no doubt reconsider again, our methods of motivation and enthusiasm to create a desire to even step over the threshold.

We started this website blog with a desire to travel accessible wheel-walking routes and to try and return to that interest is our aim. There is much to do and it will take time, there will be constant setbacks, and resilience is going to be essential. We should not ignore professional guidance, nor will we, but we do need to consider our own parental observations and understanding of what works to find that elusive balance. Our journey continues …..

Engagement

Engagement

Engaging the world and all its wonders can inspire, and settle the troubled mind. You don’t need to do much, and to venture outside your door into your garden or balcony will bring your senses into contact with the smell of the fresh air, the sounds of birds singing, the murmur of life happening. As Neil Diamond would say ‘there’s a beautiful sound …’ and as we work with our son to engage with mindfulness activities, we find many a true word in those lyrics.

Our son doesn’t always feel up to actually going out on a visit somewhere, and so we built and accessible deck, a veranda that he can step or wheel directly onto from the house, with all the safety that home provides, but with all the added benefit of being outdoors. He can sit in the sunshine benefiting from the value of it and the fresh air and we spend time working on our ‘senses’ game. Name five colours that you can see from where you are sat, name 5 sounds that you can hear with your eyes closed, name five smells that you can detect with you eyes closed, name five feelings that you can touch with you eyes closed.

It helps that we prepare with a selection of herbs and other textures when we do this and it is important that we play it for only just long enough that his enthusiasm allows, or it would become an unwanted chore, linked with being outdoors and a resistance would develop and make the task harder in future.

Of course, we are often joined by our pets, who just want to be in the act as well, and often our senses pick up the barking of a dog, the feel of her fur :))

There are other times when we do get further afield, and to walk through the park with the distant sounds of children playing, the river as it runs its way across rocks in the riverbed, maybe a steam train passing by and we look for various things to identify with. A recent trip to a local park coincided with an Easter Egg hunt. This was an ideal opportunity to extend our ‘game’ to broaden the scope of identifiable items. It was for children, but when we spoke to the organisers about what we were looking to do – basically, just using their treasure map – they were immediately helpful and allowed us  to join in … as long as we didn’t want, of find an egg 🙂

Even though the day was dull and cloudy, we had such fun and a great experience to add to our social stories of successes that we can also use to help recall the feeling of ‘happiness’

Guilt

Guilt

A few hours respite

An opportunity to spend a few hours together without our son should be a period of respite that is a blessing and fully enjoyed to recharge often drained resilience. Strangely though, even after 30 years, we still find going out alone and entrusting our sons care to another person difficult.

Our mind is continually occupied with the fear and uncertainty that he must be thinking when we are not around and this prevents us from fully enjoying our own experience and harbouring a sense of guilt.

This could be viewed as having created a ‘rod for our own backs’ and we should just do it, and do it more frequently and that our son (allegedly) will get used to it and will be ok. Maybe that is right, it just doesn’t sit well with us and when we have seen and been told how he responds in our absence, I’m not so sure it is wholly correct.

I even had one person explain that we need to ‘train’ him like we would a ‘dog’ and he will get used to the routine. I saw red at this as you can imagine and though we do accept there is a balance to be found and that we should not ignore our own wellbeing – which we have in the years that have passed us by, but that’s another story – but not at the expense of creating a sense of abandonment by our son, who due to both learning disabilities and severe autism is unable to process our absence as just being for a few hours, he believes we have gone for good and his anxiety takes a turn for the worse.

Some of this is as a result of aspects of his complex condition not being diagnosed until he was 29 and so coping techniques had not been developed and matured over the important years of his early childhood. We are beginning that process now.

All this said it is important that we explain clearly what we are doing and for how long and exactly when we will be back, and stick to it and fully explain what happened while we were out and encourage our son to explain what he did during those hours, as we listen patiently and sharing photographs with each other of our days. The anxiety subsides and we can reflect on the time away as so beneficial, not only to ourselves for those essential few hours but also part of the ‘coping technique’ by our son and a supporting family member in learning to live a few hours without us being there.

Win-win? I think so 🙂

The great outdoors

The great outdoors

Inspection of the new all-weather area

Being outside in nature is good for our bodies and our minds.

• Breathing lungs full of fresh air is great for our respiratory system, getting the oxygen flowing and boosting our cells, strengthening and cleansing us.
• Soaking in some sun rays help Vitamin D to soak into our bones, helping our immune system and nervous system.
• If we’re exercising outside, walking the dog, going for a run, strolling to work, is also better for us than exercising indoors.
• Stress reduction – Taking a break, sitting in the garden, enjoying lunch on a bench, or gardening and spending some time out, relaxing, looking after ourselves and reconnecting or course will have huge benefits too on our emotional health.

From earlier posts, you will know how difficult it can be for our son to go outdoors, even with the encouragement of his new dog, Miss Bronte, who has worked wonders in easing some of the fear and resistance, but as yet, not completely.

We decided to add a new feature to our garden for him, and that is a large deck that he can access without steps or ramps so that either in a wheelchair or supported by ourselves, he can move outside into the sunshine and fresh air and so adding that little bit of natural support to his health but without leaving the ‘safety’ of home.

As always, provision of something like this costs money, but money (and time) well spent to achieve this little extra for him. As well as our developing ‘Sensory Garden’, this large deck will be home plants that attract butterflies and bees and overlook the lawns and bird feeders and nesting boxes. We have wheelchair Quoits to play – when Miss Bronte doesn’t chase all the thrown ropes – and a giant Jenga game that is intended to help his hand-eye coordination and concentration. Of course, we also have our picnic basket and flask.

Sadly the ‘Bistro Garden’ has been removed to make way for this new all-weather place, which will be known as our ‘Deck Garden’ – more on how this develops in future posts.

World Autism Awareness Week

World Autism Awareness Week

As World Autism Awareness Week draws to a close today (Monday 27th March – 2nd April) I get to wonder, how many more people understand, not only what the Autistic Spectrum is and what aspect it covers, or indeed how very complex this condition is.

The National Autistic Society do a great job supporting those on the Autistic spectrum, but even they can only generalise in the hope, I find, that they can signpost you in the correct direction for more individual support. No two people are alike and this in itself is a difficult concept to grasp.

Over the week, I have listened to several individuals who are billed as ‘having Autism’ and they are happily being interviewed, explaining how they have written books, they are presenters, lecturers, own a company or are on the board of a company and guide others, and I have to say, I find this gives the general public a very simplistic, and possibly a ‘so-what’ view of what it’s like to have Autism and that those living a life with Autism which leaves you, uncommunicative, or terrified about leaving the house due to the level of anxiety, the need for sensory stimulation, or avoidance, having to wear headphones to block out the noise etc. continually appears to be ignored by the mainstream news channels.

The number of people I meet who ask my son, ‘what do you excel at?’ because they have seen news articles that show people with Autism have computing skills, or numeracy skills, or are a musical genius etc – No, I don’t feel that Autism is a condition that is getting understood in any meaningful way. I’m tempted to reply to these people … because my son can’t (uncommunicative) … that we battle to even get him out of the house because he’s afraid of the outdoors and where he excels is actually passing over the threshold of the house …. but I decline, as I need to stay more positive and just smile politely and explain it remains under development.

Many people with Autism can do what these interviewees can and in some cases more and I am delighted for them. If you meet someone with Autism or a parent or carer of someone with Autism, can I ask, don’t assume they are the same as they have seen on TV but try and understand the complexity of that person and how both their and their families lives are affected, I can virtually guarantee you will get a very different view of what Autism is all about. And you never know, you may be able to offer support yourself in some way that opens doors to that individual in simple ways, but ways that allow them to access this great world just a little bit more.

The extra mile

The extra mile

Go that extra mile

Our son is now 30 years old. Over the years, and at times, even today, one of the biggest challenges to my wife and I is acceptance. Becoming the parent of a child – or even an older relative – with additional needs does require a level of acceptance and commitment that you may never have thought about.

This doesn’t mean that you will love them any less, though you will likely go through periods of frustration and maybe even envy until you truly accept the position and role you find yourself in. Friends and family will talk about holidaying here and there, flying, cruising, dancing even hiking, generally accessing all those activities and places seemingly at the drop of a hat and you sit back, look around you in your seemingly contained world and think, ‘is this all that I have?’

I would suggest, acceptance of your position is the first step towards embracing all this, and more, for yourself too. At first, the thought of caring for someone your whole life, and their whole life appears daunting and very restricting, but if you don’t accept it, you lose the ability to plan ‘how’ and when, you can once again, holiday, fly, cruise and dance.

In our case, that acceptance came very early when we realised that there was not going to be a ‘cure’ that will make our son well again and that, the older he becomes, the more challenging his care and support will be. At that point, we realised – often painfully – that we will also need to access help and support from professional bodies and other parent carers who can guide us through expectations that they have seen time and time again and can offer us advice on what to expect in the future. Yes there are also grants and benefits, allowances and respite opportunities that all need exploring and you will find is an ongoing process too, but what you realise is that your world doesn’t end as a carer and you don’t become a prisoner to your relatives needs, but all you need is a desire, ambition and belief and accept the only real change, is that you need to plan ahead. Do this and you will be able to go that extra mile.

As a professional before I retired, amongst other things I was responsible for managing ‘change’ bringing a new understanding to a workforce who were used to the way they were doing it, developing values and strategies and one thing I always allowed for, was that spontaneity within a structured process. The human soul loves to do things on a whim, it excites, thrills and rewards when you can do something unplanned. We still do that but have learned to accept that our structure is the care and welfare of our son, but through careful preplanning and preparation, we develop time where my wife and I can be spontaneous and unplanned within this structure. There is no need to be envious of others apparently doing what they want without any care or responsibility, we do it too, but we also know we have planned it and receive the biggest reward of all, being the inclusion and joy of our son.

He has been on a Ferry, on a cable car, trains, trams, horse-drawn carriages, we have holidayed in Hotels, cabins, caravans. We have paddled in the sea, raced across fields, zip-wired, even hiked along bridle paths, and danced all night. All with multiple disabilities and wheel-chair, but we planned that extra mile, worked through each stage to be sure we can do this and do you know, there really is no limit to what can be done and with the support of others who joined our journey, my wife and I still get to go on a date together, knowing our son is cared for.

We have big things to experience yet, we want to fly on a plane, we want to canoe on a lake, we want to swim in the sea, go caving and do you know, we will! all we need to do is think ahead and there are those who will help us do it.

Do not think you cannot enjoy life to the full, even as a carer, do not think the person you care for cannot access life to the full, reach out to those who support through professionalism and experience and you will realise, you are not alone and you too can do all this, and more.

How to help manage time, with Autism

How to help manage time, with Autism

How to …

We attended a workshop today in support of people with Autism. Aside from the fact it was geared towards young children on the Autistic spectrum and not adults, we did get into a discussion about the difficulties a person with Autism has with time. Telling the time may be one thing that is learned, but what does it mean? how do you understand 15 minutes to go, for example? That simple concept may be so difficult to make sense of.

No too long ago, our son had serious problems with time. “I’ll do it when I’m good and ready’ was a typical response to urging adherence to time. He had, and still, lacks a concept of time. This becomes a problem given the number of medical appointments – which as we know, generally run late even though you go through great trouble to be there on time, but that’s another story – and managing time, or activities around time are essential.

I researched many ways to help us and eventually came up with the Time Timer or as we called it ‘the elapsed time clock’. The idea is that the person with additional needs, Autism, Learning disabilities and other challenges to understanding time can view a decreasing marker of a remaining period up to a given length of time, without having to worry about what “in ten minutes” actually means. The red marker reduces in size in time with time and we found that our son could understand when the red marker is gone (and a little buzzer sounds) it’s time to get ready – this can be used in many different situations, but for us, we had to get ready to go out.

To say it worked is an understatement. Our son responded without argument or fuss and when he saw the red vanish, he immediately began to get ready – or at least, allowed us to get him ready – and off we went. We used this for about six months, but crucially learned not to rely on the clock alone, but to set a 15-minute routine that he associates with, then a 10-minute, 5-minute and so on, routine, which he now associates with getting ready. We retired this clock and currently have no requirement for it.

I spoke of this at the workshop and surprisingly, the group had not heard of it and were delighted for the solution we had found and shared with them.

Clearly, this is something we should not keep to ourselves but share our success widely and openly through this blog and ‘how to’ category. The link in the page takes you to the manufacturer website  “Time Timer“. I hope you find this useful and if you try it, that you find it works as well as we did.