Winter. It can be a long, dark season. Health challenges can be the same. We spend long months dealing with the challenging consequences of serious illness. Many times giving into despair, wondering what the future will hold. Even, will there be a future.
And yet, as surely as winter eventually gives way to spring, the sun starts shining, rosebuds appear and a lighter mood returns. likewise, all of our days appear that little bit brighter too. Not through the serious conditions suffered having been cured. We understand only too well that they will not be. But an essential acceptance of those conditions and lifestyle changes to meet all needs is developed once again.
“There is always a way” we were once told. Though, ‘the way‘ may be totally unexpected, once found, and accepted, dealing with such challenges we need to, becomes so much easier.
Opportunities are abound. Focus and determination are required to uncover and access them, but they are there.
Life is for living, and though we face things very differently to many, that is what we will do …
Over the years, I have come to understand that when a person is born with autism, they view the world as God intended. Colours, sound, movement and the interaction with life. It is classed it as neurodiversity, which is a convenient label for those who do not see the world as those who are neurotypical.
Put aside those labels though, a person with autism experiences life to the full, or they can, as long as we understand the world in the way that they see it, and facilitate changes to allow them to flourish.
Epilepsy however, is savage. It is a condition whereby the brain triggers electrical impulses which impact adversely on the mind and body. The condition can, in many cases, be treated with medication which calms those electrical signals and allowing a person to go about their life almost as normal. Around 30% – 40% of people suffering epilepsy are however drug-resistant, known as having medically refractory epilepsy. For these people they continually suffer torment and pain from seizures with little prospect of a cure.
Our son is drug-resistant. His torment is daily and though he sees the colours of the world and the sounds as they are intended due to his severe autism, these images are destroyed by the endless pain he suffers.
We reach out to assigned neurologist’s to guide us and advise us and we talk openly about our sons declining health and his pain. The response that “there is nothing more we can do” is not what any parent wants, or needs to hear. Worse is when we are told that we are being discharged from their care because there is nothing more they can do!
The isolation we as parents have felt throughout our son’s life is today, felt suddenly so much more acute, and the lonely road we have been walking has become endless and frightening. Who do we turn to now to hold our hand when we become fearful? General practitioners, with the greatest respect, do not understand the granular detail of epilepsy and without access to a specialist epilepsy clinic and neurologists, we have nobody to discuss our concerns or thoughts with.
This may be a consequence of the demands on our health system following the height of the COVID pandemic, these specialist are needed to care for those for whom they can still make a difference. When there is no more that can be done, they argue there is no point in tying up specialist time. This does not help our son. This does not help ourselves.
I have long been an advocate of sharing our story and encouraging others to do likewise, if awareness is not increased, this is a condition that will not receive the focus or the funding to make progress in finding a cure for all those who suffer. We may face a future where our son continues to suffer daily and we fear the day when he may lose his life through sudden and unexplained death in epilepsy (SUDEP) but if we continue to share our experiences, the journey we have been on and will go on, something in what we say, may help another on that lonely road, if nothing else, to feel less alone.
This is a savage condition, not only through seizures causing intense pain, unconsciousness, incontinence and many other effects, recovery can take hours if not days to recover from a bad attack. We do what we can, we have found ways of bringing comfort to our son, though we remain unable to stop his seizures. We are not medic’s, we are not specialists in epilepsy, we do however study all aspects and research on the condition, looking for that glimmer of knowledge that may help us, help him, and indeed share more widely.
Life is for living and with additional considerations we can ensure and encourage our son to engage meaningfully in a world that seems to continually turn it’s back on him. As long as I draw breath, my back will never turn.
Epilepsy. The day our son was born, he convulsed continually. Virtually every day since, he has suffered from seizures that medication can not ease. From the day he was born we have been told repeatedly that he will not survive. Initially, beyond that first night, and then on several occasions since as his health has continually suffered.
We need to take these warnings serious as he is clearly at high risk of SUDEP. Sudden and Unexplained death in Epilepsy.
As each seizure become worse. Torturing his body and punishing his mind. Side effects from each seizure making his life a misery. A painful and upsetting misery that we are helpless to do anything about, other than to be there and to support him throughout each day. We talk with his specialist team about the changes and seek help and guidance from them. We know that we have run out of options to help him medically. Over 35 years we have tried many combinations of anti-epileptic drugs, each combination making things worse for him. Epilepsy remains a condition that is still not fully understood and lacks enough focus and investment as with many other conditions.
Focal onset seizures, Focal to bilateral tonic-clonic seizures, Focal aware seizures, Focal awareness impaired Seizures, Generalised onset seizures, Clonic seizures, Absences, Gelastic seizures, Myoclonic seizures, Tonic and atonic seizures … we have learned so much about them all, how to spot the symptoms and what action to take. That learning does not do anything to relieve our son from suffering, only ensures we never leave his side.
We do not know what our sons future will hold. Nobody does. The reality is that God could decide our son has suffered enough and will take him to him to be with him today, tomorrow, next year. All we can do is love him in the time we have and ensure he understands he is loved and to fear nothing.
As a parent, the anxiety of worry is very wearying and lies heavy on our shoulders, but even this is nothing compared to the trauma our son goes through daily.
The thud of mail landing on the doormat signal another late delivery. 4:15pm! long gone are the days when mail would arrive early in the morning, often before I left to work (when I was working) and another second delivery around lunchtime. No, today at best, we can expect only one delivery and due to staffing shortages and work practices, there is not set time when we will get a delivery, if at all.
Never the less, to have that familiar thud does herald the arrival of something potentially of interest. Well at least usually. Of late, we are receiving plastic charity bags, from organisations looking for old clothes, bric-a-brac to support many charities. Also local election fliers telling us how good a political party candidate is and how we will benefit, if only we put a cross against their name next week.
I gather up the delivered envelopes. Charity bag, flier, another flier a letter from the NHS telling me all letters will now be digital and to access an online account, and a larger envelope containing my subscribed ‘Garden Answers’ magazine. This and ‘Gardeners World’ magazine have been a life line to me personally over the last two years. A little contact with those who can help me make our garden beautiful. I look at the pictures and then at our own garden. Hmmm! work to do I think.
One of the articles is on the Chelsea Flower Show. After two years being held virtually and in September, it is now being staged at it’s normal time in May. And open to the public again. What hit me hard was the timing. Are we really only days away from May. Only 7 or 8 weeks away from this years longest day and the summer equinox on 21st June, and then, darker nights start arriving as each day then takes us to autumn.
We seem to have waited for so long now, hiding away to protect ourselves and our son from the COVID19 virus. Reduced immunity leaves our son vulnerable to infection and so we, like many others remain cautious about mixing and engaging with the world. Gardening magazines do their bit to help keep us in touch, but every day sees yet another day pass and soon we will likely have lost three years.
We make plans to try and create adventures for 2023. Praying that the virus continues to subside and allow us out. Time will tell 🙂
I think back to my own childhood and the children’s program, ‘Playschool’. In that program a look through a window revealed a world of awareness and education. “Today, we will look through the …. square window” the presenters would say. It could have been square, round or arched window, and as children, we would try and guess which one it would be before it was announced.
Role on more years that I would like to count and the principle of those windows is still so important to us in supporting our son. It is difficult for someone not directly involved with autism to understand how difficult it is for them to pass over the threshold and experience the world outside. Fear and anxiety can grip them so tightly, to take that step is just too much.
Our own son is dependant on our home to give him that sense of safety. When he feels safe, he will relax. When he relaxes, we can create an inspirational environment. We have made adaptations to our home and one key change was to install large windows that enable our son to see outside into the garden. Marc’s window, as we have come to call it allows him to look outdoors from the safety of his chair, indoors. Just like the playschool team did, they invited you to look through the window and see a new world and activities. We encourage Marc to look through this window and see all aspect of nature with birds, butterfly’s, bees, squirrels, cats as well as ourselves and our dog. We plant up pots, so that different flowers appear through spring, into summer and autumn for our son to see the colour and the movement of stems in the breeze.
Beyond the window and the pots, is the main garden. Always our aim is to encourage our son outdoors into the fresh air and (hopefully) sunshine. Include him in our planting up the pots and guiding his attention to look at the detail of each flower, the birds in the bird bath or on the feeders and the antics of the squirrels as they try continuously to get to the birds food.
We encourage our son to take photographs too, it’s not easy for him as his has a right sided hemiplegia which leave shim unable to use his arm and hand on his right hand side. I set up a tripod to help him. These photographs are the used to help recreate memories of activities he did and to generate an enthusiasm to do it again.
Encouraging him to ‘step over the threshold’ into the garden is an ideal way to reassure him that his fears and anxieties are ill-founded. Of course, every time we look to step outside, we need to repeat a process of reassurance, but, it works. With patience and encouragement, our son will go outdoors and we use this success when we look to go further away from our home.
Supporting such complex needs is not easy. It is time consuming and it is often met with resistance. Calmness, resilience and an endlessly positive approach is essential and does deliver results. Get it wrong and it will take a long time to recapture a willingness and enthusiasm to indulge in something new, but get it right, and you will open up a world that will stimulate, enthuse and importantly, bring a smile.
To care for and support a person with autism will also open your own eyes to how wonderful the world is. Your detailed attention to all that is around you, needed to support the person you care for, but in doing so, you too will see colours, sounds, movement and activities in the minutest of detail as well as the larger view. You will learn, you will experience far more than you may have done previously.
A win-win outcome, all starting from looking through the window 🙂
How was it sung? Oh yes, “Regrets, I’ve had a few, but then again, too few to mention. I did what I had to do, and saw it through without exemption. I planned each chartered course, each careful step along the byway, but more, much more than this …. I did it my way!”
It has been a long, long time since those first days under ‘lockdown’ laws and we have come to know almost every inch of our home and garden so intimately. I know where the perennial weeds are growing – or about to – I know which plants are struggling with light or damp, cold wind or incorrect soil. As I sit in a favourite vantage point in the garden, I begin to contemplate all we have. And then again, some of what we do not have. It has been a difficult time over those long months, and even today, we face uncertainty and apprehension at reengaging with the world. Our son’s health is not good. His wellbeing has been declining for some time now. Seizures increasing and causing him so many daily problems, from the seizures and also the consequences of them. We have nowhere to turn in these days of declining health and social services. Regrets, yes, I have a few. Certainly not in the support and care for our son, that is without question. I do however, regret the years, before his diagnosis, when we did not understand, and therefore did not put in place plans and strategies to help at an early age. To learn then, about what we did not yet know, Should we have known? Should I have known? Could I have made the challenges he faces today, less painful for him had I only understood more back then?
I then regret not following a passion I had in gardening. Today, I envy those designers and plants-people who understand not only the names, propagation methods and growing environments. How to match colours and companion planting, layers and destinations. I followed a path that was necessary at the time as we needed income and employment stability supporting a child with additional needs. As I look at our garden today, I see random planting, amongst those growing well, there are also those that are not. Had I learned more about our sons health conditions, I may have planted and set up paths so differently, I would have been able to avoid digging up large parts today to accommodate sensory issues we now understand he suffers with.
In truth, my biggest regret is that I worry I should have done so much more, and as I look to our son, once again contorted in pain, full of fear and anxiety, worried about the very day he wakes up into, I do not know what else I can do to support him beyond that which I already do. I regret not being able to make it right.
In the coming years. I pray to God they will be years. I wonder what lies ahead and what I should be doing now, today, to prevent further regrets for some, as yet unknown situation we maybe facing.
I know only too well that we can only do the best we can in the time we have, and with the situation we find ourselves in. But, is it enough? The birds sing their songs as I continue to sit at this vantage point I enjoy. The sun has come out today and the breeze blowing has a warmth to it that suggests spring and summer have pushed back the winters chill. That said, each morning has frost covering the lawn yet.
In between cradling our son through his nightmare seizures. His body shaking uncontrollably, calming his anxiety and worry, I am grateful that we do have a garden to sit in. No matter how poor the design is, it does and has, offered opportunity to calm his fears and ease his pain, enveloped and embraced by natures warmth, and her caring arms.
I do not know what the future will hold for us, yes I do regret not knowing. I need to make sure I provide as secure and safe an environment as I can. The pandemic lockdown has affected my confidence, as I know it has many others. In time, I hope that confidence will return, it has to, much depends upon my doing the right thing and being able to plan ahead and provide that protection and confidence to our son.
As I sit, just looking, listening and sensing all that is around, I consider the meetings which are coming up in the next few weeks which may dictate a range of changes we need to make to where and how we live to ensure we best meet our son’s declining health.
Throughout March, and into April, we have recognised and shared awareness – together, hopefully, with some acceptance = of the conditions of Hydrocephalus, Epilepsy and Autism.
Each one, we have first hand experience of and what it takes to support somebody with a complex mix of these and other disabilities.
Through supporting our son, we have learned resilience. In particular how to become a resilient gardener..
Gardening is being prescribed as a medical treatment now. I can understand why, but care needs to be taken in ensuring a person receiving this therapy is being appropriately supported and guided.
Personally, I do not believe it enough just to thrust your hands into the soil and feel all ill’s are cured. It does create a sense of calm. It does help you feel at one with the world and the sense of focus as you work in the garden is incredible. That focus helps ease the mind from all random and distracting thoughts that may be causing unrest.
How then can a person who has difficulty in understanding emotions and sensations, know that when their hands are deep in soil or compost they feel calm.? It is not that automatic. This person, just like our son needs to be encouraged to do this, and then talked through the sensations they feel.
What makes you happy? Our son cannot answer this. Instead, he feels threatened by the person who asks the question. He has no understanding of the meaning, or the feeling associated with the word ‘happy’. The fact that he cannot process this, raises anxiety and genuine fear. Instead. I show him by taking the lead and pushing my own hands deep into the compost first. He watches intently. I tell him it feels cool and pull them out again. He sees the residual dry compost on my hands and I encourage him to do like I had. After some hesitation, and a period where I place a handful of compost into his upturned hand to get used to the feel, he plunges his hand into the sack of compost.
I ask him “does it feel cool?” “Can you feel the softness?” all questions designed to encourage our son to think about the sensations. As he is considering the feeling, his anxiety eases. As his anxiety eases, he becomes calmer and happier.
It doesn’t last, but for the moment, it has made a difference. Building on this type of assisted activity over the years, we have been able to encourage our son to step over the threshold and join me in doing some gardening.
The resilience to gardening comes from the time I can spend in the garden before needing to return and support our son through another seizure or extreme anxiety attack.
No matter how much I would like to spend a morning or an afternoon in the garden, the reality is, I will spend only 30 minutes or so. To develop a technique of 5 minutes every day does work, but the results are slow. Pave it over, I have been told – usually by those who do not understand – but the benefit to our son and to my wife and I in seeing colour, and movement in the breeze from the grasses and trees, the scent from many plants, the skimmia, the roses and others, the sight of falling blossom, bees and butterflies and the many birds. Even the sounds and tastes from home grown fruit and veggies have their place in helping our son as I use each of them in relations to situations he faces in a world that is so difficult for him.
The April rains continue to fall, the icy winds blow down from the north, but the garden delivers, slowly, but surely, as we move through the year.
If you are reading this, stay safe, keep well, and enjoy your day 🙂
March already! The weather does not seem to think so and is continually exposing us to freezing winds, significant rainfall, oh yes, and the odd day of sunshine. Even snow.
The lawns have spent seemingly weeks under inches of rainwater. Continually falling on sodden ground and slow to drain away.
There are however, reassuring signs that spring is on its way. Resilient as ever, the snowdrops, planted in-the-green last year and a hope that they survived, did indeed return to brighten these dark days and lift our low spirits. Snowdrops were followed by dwarf iris and crocus. Blue’s, yellow’s, purples and orange. Sprouting through the lawns, and from pots where they have whiled away the many months, hidden, as COVID was covering the world, only to reveal themselves ready for the early bees and to bring some natural joy to our days.
The garden is also encouraging the daffodils into flower. Dominant and tall narcissus, together with the smaller, dwarf tete-a-tete. Colour is well and truly returning. Tulips are forcing through, and in the coming few weeks will be joining their neighbours the iris Picasso in a glorious display of colour.
Jobs to do are plentiful. Resilience is needed now to encourage us to get outdoors in such awful weather to tend to those jobs we keep putting off due to a false justification that they will wait until a better, drier day. That day seldom comes and when it does, we would have left those incomplete jobs too long. Start by doing just five minutes. I know it takes half an hour getting all the kit together. Secateurs, rake, spade, hoe, fork, loppers, mulch, compost, cuttings bag. Dressed in wellies, new waterproofs, gardening gloves and Tilley hat, I do step over the threshold. It’s freezing cold, the family watch from the warmth indoors, raindrops running down the windows.
First job is to pull up all the dead sodden crocosmia leaves. Already this years new growth is pushing through these dead leaves. It’s going to be a messy five minutes …..
Two hours later, I call it a day. I’ve cleared. I’ve pruned, I’ve edged and I’ve divided. Tomorrow will be another day 🙂
No one in their right mind should be outdoors gardening when the weather is like it is. Temperatures down to no more than +2C and a northerly wind adding to the chill factor. Sunshine suddenly sweeping across the garden, followed by heavy hail showers and freezing rain. Just enough time to walk swiftly around our grounds and to see all that is happening.
Lawns absolutely waterlogged. I need to add drainage underground, or additional ‘all-weather’ walkways to connect existing paths to each other to avoid the additional damage of walking on wet or frosted grass.
Spring bulbs just continue to do what they do best by forcing their way up through these waterlogged lawns, through the still lying fallen leaves from last autumn and winter and in the border beds, crying out to us “we are here”
An, as to yet hang bird nesting box, still sitting on out bistro table on the decking is receiving constant attention by a couple of Blue Tits. In and out of the round opening, I’m thinking, I cannot move it now and need to plan to have our coffee’s – when the weather picks up – around this obviously desirable residence so as not to disturb it.
The tell tale ‘ping’ of an email dropping into my mail box reminds me of the up coming Hydrocephalus awareness week. When our son was born, this was the first condition he had to face and we had to learn about. It had very nearly taken his life only hours after he was born. The support group ‘Shine’ is an apt name suggesting that even with such a condition and its side effects, a person can still shine and achieve in life. Formerly known as ‘Association of Spina Bifada and Hydrocephalus’ (ASBAH) it was a representative from this charity who spoke to myself and my wife while he was still fighting for life in hospital, only days after he was born. Back then we didn’t want to know what they had to say to us. Nothing they said could give us hope. Dismissing their approach was the first of many mistakes we came to regret as we learned to parent a special needs child.
Ever since, and wanting to make amends, I always seek to create awareness for this condition and will talk about it and our experience in greater detail during the awareness week in March.
Of course, both Autism and Epilepsy is also close to our hearts and story and as their respective awareness weeks come up, I will talk about how they have impacted our son as well and provide links to valuable information sources. All I ask is forgiveness as I indulge in talking about these conditions that both create nightmares as well as magical moments.
The ground continues to be covered in hail, just as it starts to melt away another shower falls and all that can be done is to put the kettle back on and settle in for another day watching the Winter Olympics.
Cold, wet, windy. My five minutes in the garden today was all too brief. I’ll do ten minutes tomorrow I tell myself. Sitting indoors with a hot mug of tea, and watching the early stages of the Winter Olympics on TV, Curling and Ice Hockey, I’m wracked with guilt that I could and indeed should, have done more.
I put my coat back on and made a conscious effort to walk around the gardens and really look at the signs of new growth and what is beginning to grow. As everyone does, I’m sure, there are favourites that I just hope will show the early signs of growth and when they are indeed seen, a warmth flows through my body, knowing that all will be well. Others, like thalictrum delavayi (pictured here) and the Acer will not reveal themselves for weeks yet.
The inspection took about fifteen minutes. I’ve banked another couple of days worth of five minute gardening activity I try and kid myself. In fact, it was very useful time spent as I have also marked up those perennials that will need dividing and replanting in the coming days.