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.

Purple Day

Purple Day

Purple Day – 26th March

A day to raise awareness of epilepsy

Purple Day is the international day for epilepsy and falls on 26th March each year. Purple Day was created in 2008 by Cassidy Megan, a young girl from Canada, who has epilepsy and wanted to get people talking about the condition.

Find out more here

Interventions

Interventions

Happiness, is …

We have been working on creating a ‘communication passport’ over the last few days with a speech and language therapist. The idea is that people who our son will meet will be able to read through this and get an idea of how to approach him, how to talk to him and make him comfortable and to understand some key likes and dislikes, before finding out through meltdowns or silence.

It’s a great idea. Managing it will be a challenge though, as already this document is 19 pages long and although key information is contained in it, I wonder how much time a person will have to read through 19+ pages before they engage with him. I think the audience will be selective with people who will be spending regular time with him and will be able to understand it over time.

We are also working through a similar process with a ‘medical passport’ intended to give Nurses and Doctors a guide as to how to engage with our son should he need to be admitted to hospital and what reactions to certain situations they may find. Again, a great idea, but I have this nagging doubt as to it’s practicality given that is also over 20 pages long.

I think, what we really found with this process is just how complex disability can be. We obviously know it first hand for our son, but many people will be in a similar situation and have to manage one aspect which impacts on another, and another.

We try and face life with all it’s challenges as a positive and opportunity filled time, and when you have to sit down and discuss with the many professionals, how it really is – you can’t just brush it aside at times like this – it can become very disheartening and keeping a positive attitude throughout is hard.

I’m sure many people will have been through the same, and after two weeks of coinciding assessments and reviews, essentially talking about the worst days our son has and the impact of those dark days, we all now feel emotionally exhausted and in truth, quite low.

However, never wanting to let this keep us down, we accept we have been through it, most are now completed and the usual routine of check-ups will kick in periodically again and we have decided to have a ‘deck’ built for us – rather than do it myself – which will allow easier access for our son encouraging him to get outside when the sun does actually shine and he and his dog can sit basking with a picnic and flask of coffee and his pot gardens and pot ponds can be brought into easy reach, not to mention a setting for his camera to picture the many different birds we see – including those nesting in last years boxes.

I wrote a piece on ‘what makes you happy’ and actually, certainly in our world, it’s those small things, like sitting in the garden with a flask of coffee – sure we love to visit the beach and coastal cafe’s, but sometimes, that ability to step (or wheel) over the doors threshold onto a purpose built staging, and sit in the sun with a drink …. it’s all we need

A whispered tip

A whispered tip

A thing you love …

A stranger came to us today as we were completing our final assessments for this week.

“Sometimes try to forget yourself in a thing you love, forgetting yourself will actually help you find yourself”  she whispered to us. Handing us a slip of paper with a note on it, she disappeared into a crowd. Somewhere in that whispered message, we found strength and calm.

Who she was, we will never know, why she came to us is a mystery, but we must have been seen to be questioning our own worth.

 

The note was a quote:

“Do you want to know who you are? Don’t ask, act! Action will delineate and define you” – Thomas Jefferson

Rethinking

Rethinking

Stop, evaluate and if needed, rethink

During my working years, colleagues and managers always ensured they had a three and five year ‘plan’ – one that saw ambition, training and development and opportunity, clearly defined and a route marked out to follow. I always smiled to myself when I was asked, at least every year at the annual appraisal, “what does your three and five year plan look like and what progress are you making?” My answer was always the same, ‘I don’t have a plan beyond tonight, tomorrow will be unknown until we get there, but tonight, we are introducing a different food to our son, to ensure a balanced diet’ I’m sure I never made the big time because of answer’s like this … perhaps I should have made something up and been highly successful now 🙂

There is a mid way between the two though, and maybe I was just being awkward at work, but those who care for someone will likely understand when I say that every day is a new day and that new day may bring happiness and new adventures, or it may bring regression, pain and turmoil just as easy. A three or five year plan needs to be flexible enough to allow rethinking of the laid out objectives. For instance, we may want to experience a flight on a plane, but equally, that may never happen so don’t dwell on it.

As a follower and sometime workplace coach of NLP (Neuro-linguistic Programming) we do have a focus of sorts and this blog site hopes to put over our drive and determination to promote an inclusive society we dream of.

Neuro-linguistic programming is an approach to communication, personal development, and psychotherapy created by Richard Bandler and John Grinder in California, United States in the 1970s. NLP’s creators claim there is a connection between neurological processes, language and behavioral patterns learned through experience, and that these can be changed to achieve specific goals in life. Bandler and Grinder also claim that NLP methodology can “model” the skills of exceptional people, allowing anyone to acquire those skills. They claim as well that, often in a single session, NLP can treat problems such as phobias, depression, tic disorders, psychosomatic illnesses, near-sightedness, allergy, common cold, and learning disorders.
I don’t know enough to argue the point with these people, far from it, in my experience using the principles of NLP have help me to quietly influence opinion, determine personal direction and also inspired a stepping stone approach to helping our son achieve, where we have broken down end goals into achievable steps. Today, I think that there is no such thing as a three or five year plan – save that for business models – no I believe it is a life-time plan that may have stages in it which could be hourly, annually or even decades for each step. The important think is to evaluate your progress, rethink your next steps and maybe rethink your goals. If your goals are sound and you truly believe them, they will remain, but you may need to rethink your journey to get there.
We have reached a point this week where we need to pause and rethink how to move forward. Some doors have been shut and the proverbial backs have been turned on us, needing now that we look for another opening and other opportunities.
A moment of silly

A moment of silly

Have you ever stopped a minute and considered if life is too serious? Sure, it’s full of major decisions that need making, strategies that need developing, bad new, sad news and general doom and gloom. Have you ever considered just doing something for fun? No reasoning, no pre-thinking, just pure ‘silly’ harmless, fun.

I promise you, it puts the woes of the world in perspective, eases tension in your own life and …. it allows you to smile, at least for a while 🙂

Make yourself a promise today, this minute, that you will do something ‘silly’ each day and ensure you laugh, at least once. You will not regret it 🙂

SUDEP

SUDEP

sudep

Sometimes a person with epilepsy dies during or following a seizure for no obvious reason. This Sudden Unexpected Death in Epilepsy (SUDEP) is uncommon and in some cases may be preventable.

About SUDEP

For many people, epilepsy is a condition which can be well-managed and has little or no impact on their life. For others, ongoing seizures mean that epilepsy has a long-term impact on them and their ability to have a ‘normal life’. Like some other medical conditions, epilepsy can be a cause of death in some individuals, although this is not common.

There are more than half a million people with epilepsy in the UK. Around 600 people die each year due to Sudden unexpected death in epilepsy (or SUDEP). Although the percentage of the population who are affected by SUDEP is relatively low, every death due to SUDEP is thought to be potentially avoidable.

SUDEP is a research priority for Epilepsy Society, and researchers have made an important breakthrough in discovering that an individual’s genetic makeup may contribute to the risk of SUDEP.

SUDEP can be a difficult subject to talk about. It can be upsetting or worrying to think about. Knowing a little about SUDEP and the risks around having seizures might help you to work out what risks apply to you and how to reduce them so you can feel more in control.

Definition of SUDEP

The textbook definition of SUDEP is

“the sudden, unexpected, witnessed or unwitnessed, non-traumatic, and non-drowning death in patients with epilepsy with or without evidence for a seizure, and excluding documented status epilepticus, in which postmortem examination does not reveal a structural or toxicological cause for death”

This means that SUDEP is when someone is believed to have died during or after a seizure where no other cause of death can be found.

Why does SUDEP happen?

The reasons for SUDEP are not clearly understood. As SUDEP is thought to happen either during or following a seizure, it is possible that it is due to a problem with the person’s heart or breathing during or following the seizure.

The risk factors around SUDEP

Although we don’t know for certain why it happens, there are some situations that are thought to make SUDEP more likely in certain people.

  • As SUDEP is thought to happen during or following a seizure, uncontrolled or poorly controlled seizures are a risk.
  • SUDEP is thought to be more likely in people with frequent seizures, particularly convulsive seizures, than in people with infrequent seizures.

It is worth remembering that the risk of SUDEP varies from one person to another but some of the risks around SUDEP can be reduced.

Reducing risk

As SUDEP is thought to be linked to seizures happening, getting the best seizure control possible is a positive way to reduce risks, including the risk of accident, injury and SUDEP.

Getting the best seizure control possible might include:

  • Take anti-epileptic drugs (AEDs) consistently (every day) and around the same time or times each day. This is sometimes referred to as ‘being adherent’ to medication. If you have difficulties taking your medication (for example, if you find it difficult to remember to take your medication), aids such as pill boxes (drug wallets) might be helpful.
  • Keep a diary of when your seizures happen. This will help to show if there is a pattern to your seizures and whether any situations trigger your seizures (like being tired or stressed). It might also be useful to see how well medication is working to control your seizures. Download ‘Epilepsy Society’ free paper or electronic seizure diaries.
  • If you are still having seizures, having a review of your epilepsy and treatment with a neurologist or epilepsy nurse might be helpful. There may be changes to your treatment that would help to reduce the number of seizures you have.

SUDEP and sleep

SUDEP often happens when the person is asleep. If you have seizures during sleep, having a seizure alarm that alerts someone if you have a seizure, might be helpful. This means that help can be called to check on you at night.

Using safety or ‘anti-suffocation’ pillows, which have holes in them for ventilation means that if you are face down on the pillow during a seizure, you may be able to breathe more easily.

Find out more about alarms and safety aids.

“What makes you happy?”

“What makes you happy?”

Wheel-walking in the fresh air

Not for the first time our son has been asked this question and again today, he replied by sitting quietly looking into space, not able to reply. It’s not that he doesn’t experience happy things, but is unable to relate such happiness to the word. “Tell me about a moment you enjoy” the interviewer tried asking again, to receive the same response.

For you and I, the question conjours up many pleasant thoughts and memories, such as running barefoot along the shoreline as the waves break over your feet, or waist-deep in a field of corn, or sat watching the sun rise, or set, listening to a piece of music, spending quality time with your family, and friends. Almost immediately you will recall many things that make you happy and which bring a smile to your lips when you recall them.

For a person with mental health issues, the same is not always true and they need help to focus on and recall those happy times, pushing back the anxiety and depression that block their visualisation.

This was brought home to us today when in one of many assessments and reviews this week, our son was not only unable to recall something that made him happy, he didn’t even understand the question. On this occasion, we were working with a very understanding assessor, who helped us develop a technique, building on photographic records of our son’s daily activities, doing things that made him happy and others that maybe not so – I’m delighted I had already started recording days out this way but there is much more to do, now we understand the principle behind it – The pictures will be used at the end of each activity and together we will talk through the level of enjoyment and fun and grade them in three groups initially representing ‘Happy’ ‘Ok’ and ‘Unhappy’

Using these we can then look to talk through each picture, what we did, what he felt like doing it, was he smiling in the photograph, was it raining or sunny and help him recreate that recollection with this photographic stimulus. The aim is to encourage him to reveal that which he would like to do again, or not and this helps us develop a schedule of activity for the next few days.

Next time you are asked ‘what makes you happy’ please give a thought to those who don’t know and maybe give a little time to help them journey to that same place. It takes a lot of time, and a lot of patience, but once there, it’s so rewarding for both parties

Resilient

Resilient

Scheduling

Defined as “(of a person or animal) able to withstand or recover quickly from difficult conditions”

We do have to thank our blessings that we live in a country and society where a welfare system operates and those in need of support can get additional help to allow them to integrate and enjoy all (or at least most) of what can be experienced.

The social system, however, can be difficult to navigate your way through and the days of a single point of contact are long gone. Working to coordinate a sensible schedule of meetings and reviews can involve anything upwards of a dozen or more different organisations to provide a package of care. The challenge with using this number of organisations is balancing the need to maintain sensible and worthwhile contact and involvement, within the availability of the respective individual or department, who clearly are inundated with an ever-rising number of people in need.

Generally, we find that if an appointment is cancelled, there are between six and nine months before it can be rescheduled and so attending each one is important. It is alarming how many failed appointments we come across as we work our way through this complex process. I would urge everyone responsible for attending appointments, to do so as the impact of not showing hit’s those of us needing a consultation and having to wait as well as causing an unacceptable cost to an already stretched resource.

Anyone who is involved with Autism will recognise the challenge of waiting. Keeping yourself or the person you are with, focused, when routine and schedule are interrupted and you are in a strange and potentially (perceived) threatening environment and those anxious thoughts are raised even before you are called into your consultation.

This week we must travel to three different towns for consultations, appointments that require getting our son ready up to two hours earlier than we would normally do so, to wash, dress, feed and then medicate him even before we set off. The resilient carer will take all this in their stride and keep in a calm, happy persona to infuse that calmness across everyone you meet. This week we are quietly and privately frantic to get through all we need to, but that must stay private and not shown, if it is, we will set out son back and he will become very anxious very quickly.

Our horror deepened when our first appointment of the week was rescheduled to another consultant at the last minute – someone who did not know us, and importantly, our son did not know them – and was running 45 minutes late (which ended up an hour and ten minutes late when we were seen) We were given to believe, the cause of this delay was a previously ‘missed’ appointment that had resulted in the individual needing urgent attention and consequently it knocked on to others.

Again, you need resilience. We have learned through a painful period, to be prepared. Headphones and iPod with favourite tunes are a must to have with us, a small photograph album with key memory jogging images that hold his interest, a flask with coffee (always a winner) and above all, calming conversation to continually reassure and keep the mind terrors at bay. Even though we are meeting people to discuss the effects of Autism, we do get to question ‘why can we be in this position, surely, they understand what we are going through’ Resilience and patience win through.