The present, is a gift …

The present, is a gift …

No road is too hard

As a Dad and parent carer, there are many times when I let circumstances and the uncertain future of our son get the better of me and I lose focus on what is important.

Once essential planning has been put in place, I should worry less about the future, it hasn’t happened yet, and with life, there are many unknown twists and turns that will dictate how that future turns out. The past, well it has happened, it can’t be changed, so why spend time worrying about it. It would be fantastic to look back from time to time on memories that are packed with moments of fun and laughter. Those memories can only be created if we focus on the present. Why is it called the ‘Present’ …. because it’s a gift. A gift of life, that is yours to do make as exciting and wonderful as you can make it. Living every minute we are blessed with. I was reminded of this recently as we struggled with new information. That information was expected, but I had allowed all the uncertainties to rise to the surface instead of accepting a moment in time where information had to be acknowledged, had arrived.

I need to thank close friends who have always supported us, for reminding me of this.

We enjoy our wheel walking and there are some fabulous places that increasingly I have believed they are less accessible to our sons wheelchair than they should be. No more. I have found a wheelchair that has larger pneumatic tyres allowing more comfortable ‘off road’ usage. Adding to this, a marvellous invention from the USA called a “Freewheel” all terrain add on, this allows the smaller front casters to be raised off the ground on this single larger wheel and greater access can be gained.

So, no matter if the ground is cobbled or covered in snow (within reason), across fields and parks, or even along the shoreline on coastal walks, I thought were behind us, we are setting up a schedule to enable our son to experience more of the great outdoors and capture photographs of us picnicking … well everywhere.

I’ll update you on our journeys when the new chair and wheel has arrived, and thank you, for supporting us πŸ™‚

 

Numb, with knowledge …

Numb, with knowledge …

We have been left numb with the knowledge we have learned today.

Through our sons neurologist review, it was agreed that his Epileptic seizures are resistant to anti-epileptic drugs (AED). We knew this, after trying many different types and combinations without reduction of the seizures, we could see the lack of effectiveness.

What we needed to understand was the impact on the brain of the ongoing seizures, and the long term effect. To our surprise, we learned there is very little certainty in this area, though it is believed that Cognitive problems can develop as a result. More so in children, but also in adults. “Most cognitive complaints in adult patients are mental slowness, memory difficulties and attention deficits. In children, cognitive problems are more diffuse, responsible for language troubles, learning difficulties, poor academic outcome, behaviour problems and finally unfortunate socio-professional prognosis” we are told.

Our son has been exposed to these seizures since he was around 2 or 3 and so fits this definition completely, both child and adult. In itself, it raises questions around his Autism diagnosis and are many of his challenges as much to do with a cognitive decline due to Epilepsy caused brain damage as much as Autism? This may explain for example why the coping mechanisms and interventions are difficult to maintain and may not be fully effective.

Assuming this is correct and we find we are unable to find a way to stop his seizures, a continual decline of his cognitive ability is expected. We also had it confirmed that our son does fall within that group who are subject to sudden and unexplained death in Epilepsy (SUDEP) usually as a consequence of having a seizure that he just doesn’t recover from. An area that is known, but there is still not much understanding of. Life expectancy is shortened considerably and both these points we knew and have been battling to accept.

As for what next. Our son is being referred to a specialist centre for reassessment and potential options for us to consider. As AED’s are not having the ideal effect, it was suggested to us that Vagus nerve stimulation therapy may be an option. To be frank, we are appalled. It sounds like the electric shock treatment physicians used to administer many years ago. I’m not altogether happy with the current success rates either. It may be after reassessment, this is discounted anyway, but we will need convincing if we have to consider putting our son through further surgery with such low success rates. It would appear that any benefit, if achieved at all, could take over two years to realise.

It may well be that we have to accept that through all his complex issues, a decline in health is inevitable and all we can do is to stimulate him where and when we can, but expect an increasing amount of time just making him comfortable and safe.

Today is not a good day and though we hide our tears from our son, he does pick up on our sadness and wonders why, asking is it something he has done!

We now need a sunny day to go on a wheel-walk and forget for a while πŸ™‚

Realities of a life

Realities of a life

A couple of days before our sons neurologist review, we have high hopes that we will be able to discuss a solution that will see an end to his uncontrolled – or ‘Refractory’ seizures. The more we read and learn however, the more distressed we become and the search for that ultimate solution seems as far away now as it has been over the last 31 years.

It is suggested, that if the first two or three AED’s (or Anti Epileptic Drugs) do not control the seizures, then it is unlikely that any of them will.

We have tried a combination of over twelve different drugs, all without complete success and the one which offered the best, though not complete control, does now appear to be failing him too.

Alternate treatments are always suggested, diet (Ketogenic) though results are seen in children, not a 31 year old and only eases the symptoms in most cases, if at all. Vagus nerve stimulation, where implanted wires are connected to the Vagus nerve and an electrical impulse is passed into the Vagus nerve every 7 or 14 seconds which in turn stimulates the brain to avert the seizures. A swipe of battery over the implanted battery pack stimulates the Vagus nerve and may offset the part of the brain about to create the attack if you can sense one coming. We have met a person who has had this VNS and as our son has no warning signs, it would appear, even if it could be considered given he already has a shunt fitted, he would not get the benefit of triggering the stimulation in time to prevent one and would rely on the continual impulse being emitted into the nerve. There is also surgery, to remove part of the brain that is suffering from these attacks, again, not always successful and fraught with complications and further damage to the brain. And of course there is medication.

Our sons condition is complicated by the Autism he has struggled with all these years as well as a complex range of other conditions and as most AED’s have side affects of increased Anxiety and Depression, his already anxious mind goes into overdrive when taking medication, creating many physical symptoms but also serious terrors and hallucinations. Sadly he is now beginning to realise he is unwell and does get very down with it. We battle the reality that he is a likely candidate for SUDEP and the advice is to avoid this, seizure need to be controlled as fully as possible. If that cannot be achieved, short life expectancy and sudden death through a seizure is what the future holds.

It is a critical time and we do need to ask those direct questions of our sons Neurologist. What can be suggested to control these worsening seizures? What does the future look like for our son if they are not controlled? How long will he be able to live the life that God gave him? …. I have never been strong enough to ask these questions or listen to the answer without breaking down and I have nightmares myself wondering and worrying over what we can, or should do and how to support as fulfilling a life as possible for him.

Tomorrow we face these questions and look for any hope we can in what will be said.

 

 

10th February

10th February

I don’t know why I still get surprised when changes happen to our sons wellbeing and health so suddenly. One moment we are laughing and smiling as we wheel-walk through the snowy lanes, and then almost within hours, the veil of depression and anxiety take a grip of him once more.

Over the coming days, reviews and assessments will take place again. We know his health is failing and that lasting damage is being caused as a result of his daily seizures. In turn, they are adding to his enormous anxiety and for us, it breaks our hearts to hear him say such things as “I’ve had enough of this” and “I can’t go on anymore” We understand that a person who suffers from Autism, can and does, sensationalise expressions as they talk and we are assured that what he is saying does not actually mean the desperate things we may believe they do and in truth, within minutes, his expressions and language can change, giving some support to these assurances.

Though I write these words, they are from a parents perspective of their only child, but we do recognise that we are just onlookers to the real torment that is being suffered by our son. We need to make sure we don’t feel sorry for ourselves, or him, but to continually keep focused and positive, also hopeful that something will be considered that will ease his burden. That does become hard at times. Soon however, we will get a view of what may be considered, though in reality, it will take several months to appraise the benefit or otherwise of whatever considered intervention is decided upon.

9th February

9th February

Winter walking

Yesterday saw the sun shine on us. Still bitterly cold, but we decided we would venture out for a short wheel-walk.

Blessed with living on the doorstep of open countryside, we were able to walk out of the front door and across the road to a lane that takes us into a nearby hamlet.

Fresh air in our lungs, and with our dog, Lady Bronte, along for the exercise we passed, Sheep, Horses and some walkers who were eager to chat. Our son spends so much time indoors, to take this opportunity to see something different and to create some new memories was a real treat. To meet up with people who were willing to stop with us and chat a short while also help our son experience some positive interaction too.

Though far from easy, pushing a wheelchair up the hills to get to the top, it was worth the effort and the views were magnificent with snow capped hills and moorland. The journey down was much easier and arriving home, we shared a pre-made flask of tea and set about putting the photographs together in our sons book of memories, which has a focus on ‘happy’ times.

Not all days are as successful, but this day, was a jewel πŸ™‚

1st February

1st February

Today we dusted. When we reached our sons room, he became agitated. Initially because of the noise from the vacuum cleaner and smell of the polish and then from our moving some items, he spent 37 minutes repositioning them back into place. Never leaving the task until it was completed to his satisfaction.

Another trait of Autism can be the absolute need for things to be done in a certain way, or things positioned in exactly the right place. In this case, the hand controls for our sons TV and CD player have to be lined up exactly ‘right’ – as we moved them while dusting, he would not leave his room until they were exactly back in place.

We have learned to understand this and realise that no matter how much we encourage him to leave them or allow them to be randomly placed, it doesn’t work and we have to allow him time to complete the task. Even something like switching off the TV, for us would be the flick of a switch and then we move on. In the world of those with Autism, that simple act can be like our leaving the house with the door left wide open. It has to be switched off, then switched back on to make sure the switching off can be done again and checked, not once, but probably 14 – 15 times or more until his mind processes the fact it has been done.

There is a process of preparing him for the movement of things like the hand controls. It takes days of explaining that we will put them in a different position. Showing him, allowing him to put them back the way they were and repeating this time and time again so he gets used to it. On the day we achieve the move, that then becomes the norm and in this position the same repetitive process starts anew. “Random” is something that cannot be comprehended in his mind, nor accepted and so we support his need to be precise until in his mind, it is safe to move away.

31st January

31st January

I wanted to begin to include ‘journal’ notes in this blog, to try and capture the realities of life as it happens. As we anticipate key changes this year to try to aid and ease our son’s Epilepsy and Autism in particular, and given we have seen an overall decline over the last 12 months, such a log will help us when we look back on changes. Hopefully for the better.

My hope is that others reading this, may reflect on similarities they face, or they know of someone who faces such issues and where I will always explain how my wife and I are supporting our son through these things, in reality, we lack that network of parents or carers in similar situations to our own, to ask, …. ‘what do you do’ ? in the hope of learning something better or indeed for us to offer our ideas and experiences of successful interventions or not.

We will always welcome your input and suggestions and even comments on our approach and I will share what I learn from you with those groups and networks that we are involved with in the hope we can create a useful pool of knowledge that will help everyone.

Today is a ‘recovering’ day following a short trip out yesterday. Although our son met a few people he knows, and one in particular who held his attention and focus for the best part of half an hour – God bless her – as she left, our son began to see and hear those sights and sounds around him that give him great anxieties. We returned home at that point. Today, the joy of that half hour are forgotten, but still, the few minutes of sensory overload are the dominant thoughts which influence his mood. We are spending our time returning his thoughts to the happy moments of that conversation and to try and recover a brighter mood.

The positive of the day – and every day does have it’s positives – was that our son did have the courage to leave the home, even for a short period. We plan another short trip tomorrow and will spend the remaining part of today, reflecting on the happy conversation he had yesterday, some home based activities as we plan for his birthday at the end of the week so he is prepared for something a little different and special and detailing exactly, and I mean exactly what we will be doing tomorrow.

Never underestimate the impact such a small change can have, so when we are describing a trip (in the case of tomorrow, we are going to buy some garden supplies) what time we get up, what time we leave, which car will we use, what route will we take, how long that journey will be, where we will park, when will we set up his wheelchair, and grab bag, where we will have our coffee (this outlet has a cafΓ©, which makes things so much easier), where he will use the toilet (again, a trip anywhere must have an accessible toilet), what we are buying, when we will leave for home, what route will we come back, what time will we be home ……

I’m certain, those who are involved with anyone who has Autism, will understand exactly what I say here and there can be no deviation from this plan, which will be so firmly held in our sons mind, that we need to literally ‘tick off’ each stage on a picture plan of the trip so he can be sure we have progressed as described and expected.

Some may say, surely it would be easier to go and get the garden supplies alone and leave him secure at home so we don’t have to go through all this. Where then would his experience be, the opportunity to meet people, even though he wont engage with them, he will see different faces, a different environment, all in a controlled manner. The exposure to these experiences, no matter how small, are essential to his overall wellbeing and life skills. We will encourage our son to tender the money for our coffee and again for the supplies, he has no concept of money or it’s value beyond passing paper or coins to someone, but the action of doing so, repeated each time we can, will create a memory that when you go in a shop, you ‘pay’ before you leave.

 

Attempts at nurturing

Attempts at nurturing

We have embraced a number of projects on our journey towards gardening for mindfulness, aimed at developing our sons senses of seeing, hearing, feeling and smelling. Through these sensory enhancements, we aim to ease his terrors, calm his mind and give him the tools to help control his random thoughts and concerns. At least to try, without always having to pump medication into him.

Our first project, which is ideal for this time of year, is the sowing and cultivation of tomato seeds. Though our son will not understand some of the detail, we will talk through how the plant has spent the previous season growing and producing the seeds that we are now going to plant, aiming to give him some understanding about these minute little things in the palm of our hands. We will reflect on the fact that each of these seeds holds a leaf, stem and roots that will with his care, grow into a new plant from which we can, with care and attention, grow to give us the tomatoes that we can eat.

A lesson we need to understand, is that we need to ensure we nurture it continually and once we have committed to sow the seeds, we cannot abandon them. We have to give them constant attention, considering their needs to allow them to grow. We will use this analogy in other aspects of relationships and life where constant attention is required to enable growth and health. This is an area that his Autism prevents him from understanding, or indeed wanting to engage with and so we hope this may be a tool to help him.

As with relationships, a plant grows and has differing requirements as it grows, we need to understand that, learn about it and provide it, so that ultimately the plant, and indeed the relationships can reward us by flourishing.

What we nurture, nurtures us in return.

Our chosen Tomato seeds were recommended by a [Flickr] friend and our first Gardening for mindfulness project starts here with ‘Attempts to nurture’

A taste of reality …

A taste of reality …

It hit us all quite hard. On Christmas morning, following a well planned build up to the day. Gifts that were not expected came to light and an extreme burst of anxiety rushed in. “What’s this” … “Where is it from” … “What will I do” … “do I open it” … “Can I leave it” … and many more fears, we can only imagine were terrorising his mind as our son come across them.

A person who has Autism can react in this way and we had learned a couple of years ago, to let our son see what his gifts are, help wrap them up and place them in his Christmas sack. That way, the sudden surprise of something different is avoided and he will be calm and in control as he works through what is expected. Completely forgetting all we had learned, we added a couple of last minute gifts that friends had sent him. Suddenly the bright and cheerful morning turned into one of terror. These two gifts had the effect of creating all his worse nightmares, instantly.

That was 21 days ago. This time, although we have been able to work through the fears and eventually get round to opening the gifts, lasting troubles still plague our son with increased uncontrolled seizures, virtually daily and migraines lasting two or three days. His mobility has worsened, his sleep is increasingly disturbed, he has developed severe shakes and his mood is very dark. “I’m sick of this” … “I’ll stop taking the tablets” … ” I wish it would go away” … “I’m fed up with this” … “It’s pointless” … many words he uses as he has heard elsewhere and his Autism brings out Echolalia which is repeating words that have been heard, ironically often in context, but he has no real understanding of them.

My wife and I have seen a step change and have our own fears knowing that uncontrolled seizures can lead to SUDEP and recently several cases have been reported on in the media, bringing home the similarities of the uncontrolled seizure. We know our sons condition is complex and we know and understand his life expectancy will be shorter. We seem to be facing a period where it is very challenging to enable him to become involved in all those experiences or observations we had hoped. For much of the last 21 days, we have sat calmly in our living room with him. He has not wanted to venture outdoors at all, he has not wanted myself or my wife to leave his side and we can see a genuine fear in his eyes if we need to.

His consultants have been made aware and we are monitoring every thing for them when we see them in a few weeks time.

We turn to God to look for his watching and caring love over our son, and for strength and answers. Sometimes we just as, why? We have never heard the words, “I love you Mum, and Dad” and I guess we never will, but those smiles we get from time to time are always heart felt. Of that we are certain.

Our hands, and faith, are with the medical profession now, soon we will know the next steps we will take and our support will of course adjust and change as our sons needs evolve. We may not ever get to see the sun set or rise on a shoreline, we may not get to fly a plane, but we will do all we can to make sure he remains safe, secure and loved …

 

Eleanor …

Eleanor …

Storm Eleanor was battering us over the last day or two. Not as much damage as feared, though standing structures such as our obelisks have been blown away.

Taking a walk around the garden via the gravel paths, it was clear the amount of rain that has fallen as the lawns are almost lakes, certainly with ponds dotted here and there as the land is sodden and subsoil wet through as well. Not much can be done right now except keeping a watch for any potential damage and keeping an eye on the forecast in the hope a dry spell is coming any time soon.

All however is not lost and at a time when the planted garden is largely resting, there are exceptions as with the Winter Pansy and Primulas. Grown in both garden borders and in posts, they are doing well right now. It is important to keep them from being covered from any fallen leaves which will cause them to rot very quickly and where they appear waterlogged, to clear the water by spiking the ground or even rolling or brushing the surface water away. Primulas like it moist, but not swimming.

Today was the day to look at our new addition for the garden. A Polytunnel Steeple Green house. It’s not too big, but a great introduction to greenhouse gardening. Measuring 143cm wide x 143cm deep x 195cm tall I have – or will have, when it’s assembled – 8 staging shelves and I plan to use this for seeds, propagating existing plants and growing succulents. If successful, I may move on to a full greenhouse. Today was spent checking all the parts were to hand and understanding the assembly instructions.

With a few ‘personalised’ adjustments, this will be a place where I can work on some horticultural projects with our son, irrespective if it rains or not. An access point wide enough for allow a wheel chair through and a special bench seat set up for him to sit on while we sow seeds, propagate cuttings and create bowls and pots. All being well, we will make wreaths together in there next Christmas.