A window to a world outside …

When the rain falls. When the winds blow. When snow is seen in the icy cold wind, blowing relentlessly from the north. There is no possibility of a wheelchair user to engage with anything outdoors.

Supporting a reluctant person with special needs when every little detail, every activity is anticipated with fear, we pray that all conditions come together just perfectly.

On a day like today, a favoured window is ideal for us to sit at and just while away some time, looking for opportunities to occupy a troubled mind and bring peace, even for a few minutes.

Our resident robins visit daily and sing to us. They fear not about the weather. Looking into the window with cocked heads as if singing to us, ‘come on out, it’s not that bad’, and yet we hide indoors in the warm and watch. The robins are joined by sparrows, by blue tits, great tits, coal tits and long tailed tilts. We have found our daily feeding with sunflower hearts to be favoured by these birds. Robins need to be ground fed as they struggle with with hanging feeders. Fat balls hang in a feeder that attracts them all as well and there are often up to eight long-tail tits all hanging on together. Interestingly, they are always in pairs, there is never a lone one arriving to eat.

Of course, all the fallen seed and crumbs is eagerly scavenged by the woodpigeons, rooks and blackbirds. Occasionally we see the woodpecker fly in. Particularly for the fat balls. I explain in vain to our son that feeding these birds is like working in a restaurant. Different feed type, different feeding station and even those we deter from getting in to the feeders for the small birds are fed by scattering feed on the lawns for them. My explanation is lost on him, too much information for him to process and so I leave it, instead just pointing out the different birds flying in.

During the freezing weather I have had to dig out the ice that has formed in the bird baths and fill up again with clean rain water. As soon as I have completed it the sound of fluttering wings as the birds arrive to bathe and to drink.

Even now, so early in the year, the birds are finding bugs and beasties all over to eat that our seed seeks to supplement. In time the aphids will arrive and offer another meal to these visiting little birds.

I talk to our son about our bugs hunts. A long time has passed since we have been bug hunting and I talk about our plans to explore the garden for besties when it gets warmer. Frogs and toads, newts, dragonflies, and damsel flies, butterflies, ladybirds, bees and hover-flies in years gone by we have managed to attract them all.

Today is all about keeping warm and keeping dry, tomorrow is all about, adventure …

Over the threshold …

5th January 2022

Allow me, if I may, to paint you a picture. The threshold to outdoors is perhaps the hardest place to cross when you are filled with fear of what may lie beyond.

Two year of Pandemic controls have caused so many challenges for our son that we now need to address. Leaving the house even, is a key one.

Standing at the threshold with our son, hoping he will step outside with me, even for a short while, I look to our left, the steps leading down into this garden, giving the impression of a sunken garden, covered still with fallen leaves from the trees all around us. To their right, an area that was supposed to have an established alpine garden by now. Cotoneaster growing up and along a wall, leaves having fallen and through the bare branches, signs of repointing that has also escaped me. The fencing looks weathered and worn, not yet needing replacing, but certainly in need of treating and painting. The gravel garden no longer looks as golden as the stones are supposed to display and I regret the fact that I have neglected the raking and rolling them throughout the year. Again, another job left incomplete.

Looking to the right, at the far end of this garden room, the five barred fence and adjoining gate look almost barren and exposed rather than an integral feature to edge the garden. Beyond which is the main garden. Indecision and lack of attention has prevented completion of this area. It should by now house a potting shed and greenhouse allowing all those mini-adventures and activities to be crafted inside enabling our son to help manage his terrors and pain. A sign over the potting shed should by now have read “Head Gardeners Son” …. it’s not there!

Raised beds sit at the centre of this garden room, they are planted up and nature is doing all it can to bring on the bulbs and spring plants. Splashes of green in an area that should be, even in winter, magical to look at.

As I step outside myself into the area I had once wanted to be like a warm embrace for our son to encourage him outdoors, it looked like it had been forgotten. Our son resists stepping out, preferring instead to remain indoors. I’ll admit to not having either the time, or often, the motivation to get into the garden and nurture it. It is not so much neglected, not yet. Not quite abandoned, but certainly it has been left alone. For too long now.

Stepping out through the doorway. facing South-East. the shadows of neighbouring properties being cast along its length. This area is like a long walk. Twelve feet wide and around fifty feet long, the shadows gradually disappear as the sun rises in the sky and the whole length becomes a beautiful sun trap by midday. Today, though spring bulbs are pushing through in the cutting bed, there is not a lot here to encourage us outdoors.

Hit by relentless rain over the last few weeks and current frozen ground through sub-zero temperatures, there is not much scope to do much, other than plan for the future. Today the snow is falling.

A new gate, already painted, to be hung. Fencing and a further gate yet to be painted. A new small gravel garden to be created and form a home for our ‘Flora’ statue. A new pond in this area as experience has shown this garden to be ideal for the water grasses and lily, and indeed all the wildlife that attracts.

The potting shed and greenhouse will come, but I will add pots to grow an assortment of vegetables. Through the lockdown and limited ‘outings’ to shops to reduce the risk of catching the virus, a need to grow fruit and veg became essential. This needs to continue, not only so we can eat fresh and tasty food, but also to help our son explore and taste new tastes which can be a challenge for a person with autism.

The sun will begin to shine again, the rain clouds dry up and nature has a way of taking you by the hand once you engage with her and enthuse you to achieve many things. As a family, we remain very fearful of this COVID virus. We do not know for sure how our son may be affected if he became infected with it.

I’m sure many will relate to my feelings of emerging from a very desperate couple of years and a future that although full of promise and adventure will be embraced with caution. An optimistic caution, but caution none the less.

Our January garden will evolve. Five minutes here and five minutes there. Each little task being a step towards recreating something special that will once again reach out to our son and entice him outdoors on a bug hunt, looking for frogs and toads, butterflies and dragonflies, a variety of visiting birds, coming for the water and the seed we leave for them and hopefully they will help us with aphid control, or creating seedlings for future meals or gifts. Most importantly we will find once again, that focus of mind that will help him keep the terrors at bay and forget at least for a short time that pains he suffers as attention is distracted.

Snow is forecast again tomorrow, but I have resolutely decided that even clearing the paths and driveway of snow, is a step towards that vision I have found once again.

Something to say? …

I’m not sure if my writings are read by many, I don’t take too much interest looking at statistics and coverage, the most popular day or time this blog is looked at. I’m not writing to attract numbers, but rather, I’m writing to share a story. A journey that may be of interest, it may even be of help in certain circumstances.

For those who celebrate Thanksgiving, I want to wish you all a wonderful day. I find the excitement of getting together and sharing both stories and gratitude’s with loved ones and maybe even strangers, romantic and rewarding. There is a magic in the occasion that I hope continues, always.

Realising that Thanksgiving falls tomorrow in the USA, I’m sitting in the centre of our own decorated home with my wife and son, and of course our cat and dog and though the year, the last two years have been awful for us all, there are moments that I’m sure we can all look on, maybe not today, but in days or weeks to come, when we can contemplate all we have, and be grateful for.

Through his illness, our son reminds me how fragile life is, and yet even within that fragility, there is a resilience and strength, which I believe to be heaven sent, to support us through all the trials and tribulations we each must face. I don’t think that any family has escaped the impact of the pandemic, either through loss, or through some other hardship. There has been the wonder of communities coming together and offering a hand in friendship in a way maybe never seen before, certainly in my generation. Those heroes who have continued against all the odds to provide services to us all, even at risk of their own personal safety.

“Thank you”, “I’m sorry”, “I love you”, are phrases that seem so simple to say, but do we. If there is one thing I have learned personally over the last couple of years is that when life is unexpectedly taken away and you have, or had, something to say, don’t wait, the opportunity can so easily get taken from you. I am grateful that my immediate family is here with me. I have however lost three members of our wider family to this awful virus and in truth, never got to tell them the things I should.

Likewise, the opportunity to go on an adventure or an experience are ones I say ‘go for’ and make them happen. I know there are many who like ourselves, need to plan that little bit more to make them happen due to conditions that make inclusion a greater challenge, but I recall years ago, the day we raced across a field of long grass with our son in his wheelchair and the monumental task we had getting our son on the ‘Water-Shute’ ride at the fairground, but afterwards, the thrill of having done it, and the pictures we have of the absolute joy on his face following these and others is just magical, for him, and for us.

I would also thank those of you who have followed our story, quietly, or having given us such wonderful support and encouragement, sharing in our fun, and listening when we get down, your friendship is so very welcome, and our gratitude in being able to call you friends, is priceless.

Happy Thanksgiving, as the first Sunday of Advent is this coming Sunday, Happy Advent and let me be early in wishing you all a very Merry Christmas for when it arrives.

Christmas is coming …

… and our planning and preparation is in full swing.

Those with autism can have a difficult time enjoying the excitement of Christmas festivities. Our son is no different. The basis of this discomfort is the need for routine. Surprises such as gifts challenge the principles of routine and can build a sense of fear and apprehension with the unknown item inside the package. The putting up of decorations and Christmas trees can create similar fear and anxiety as they are an intrusion into an established environment. Something new and different that needs to be accepted and mentally processed to overcome any thoughts of danger. The number of potential triggers of anxiety are endless and anyone who lives with or cares for a person with autism will understand the importance of a gradual introduction.

We support our son by introducing aspects of Christmas early. We have routines and traditions that we follow so that our son begins to associate the routine with an event that can be enjoyed. Looking through the decoration boxes, reading Christmas tales together, watching Christmas movies are all essential beginnings. Key to a calm Christmas day is to prepare a list for Santa together. Adding things that our son talks fondly about. We create the magic of helping Santa buy the gifts and once our son has carefully looked at and handled them, we wrap them together and place them somewhere he can see and become familiar with this new, but now hidden gift. Don’t for one minute think that this destroys the sense of surprise when the present so opened on Christmas morning, quite the reverse, this process allows our son to feel a surprise that he knows is not a threat and the excitement of opening an item he chose is nothing less than thrilling for us to watch. And his smile is genuine.

I know that the twelve days of Christmas come after Christmas, but we have adapted it to use as an introduction to items of Christmas which will be seen as we head through to the big day. Using photography, I show our son an abstract image which we talk about, trying to guess what it is. The day after I show a picture of the full item and talk about it some more, the day after we display the item in full view. The twelve days begins on 1st December and concludes on Christmas Eve. It’s a little bit of fun, but for us, it works and with other interventions, it helps our son embrace the Christmas festivities more calmly than he once did.

That has got to be worth a smile 🙂

A life, in a day …

Never more so has the thought of a whole life being experienced in the period of a day.g As our son experiences seizure after seizure each day, and sadly every day, his thoughts and memories are wiped away and replaced with confusion and pain.

It is said that a person who has epilepsy also needs the resilience to understand that resting is needed for their recovery. Memory loss occurs, attention is lost, and pain engulfs the body without mercy.

Increasingly we find that our son starts each day almost without knowledge of what took place the previous day, or any thought for what may happen the next … or even if there is a tomorrow. His life is, in the current day.

It’s difficult. For him, and for us. His care is imperative, even if a challenge. Understanding his thoughts during times of pain and fear is essential, as is endeavouring to fulfil some sense of achievement each and every moment we can.

Gardeners Journal notes …

Notes! Endless notes. November brings leaf fall and rain fall and more jobs seem to get added to the to-do list than crossed off.

I’m sure you know how it is when you do get out into the garden. Today there was a break in the weather, the sun even shined and for a while there, it was quite warm again. I am still grass cutting. Blades raised though to protect the winter lawns and importantly I was lifting the fallen leaves. I know, I know, with tomorrows winds and rain the Oak and Sycamore will cast more leaves on the newly manicured lawn. But that’s what being a gardener is all about and those who do likewise will rejoice at the compost we are creating this month.

As I walk round with the mower, the inevitable list is being created in my mind, to later write down. Dig back the gravel path here and there and sow grass seed instead. Edge the lawn to create the sharp formal line I like. Lift the perennials that had been left behind and replant into the dedicated border. Set up new pots – use the large Gothic styled ones – and plant up Hosta’s, Bleeding Heart and Ferns. Remember, position them before filling as they will be too heavy to move otherwise. I need the pergola arch and full height gate ordering. They need to be in place before Christmas and decked with lights. Oh yes, order the bare rooted English Yew for the new hedge, and plant it before the frosts.

Two Acers are needed and have yet to be ordered to sit alongside the new pergola arch and gothic garden mirrors …. but wait, my to-do list is just getting longer and longer. Next job is to break all this and more down into bite sized activities of no more than an hour to allow time for my caring role too.

I only set out to clear up the fallen leaves. Becoming captivated by the garden is not unusual and I challenge anyone not to get lost and absorbed in what you are doing, be it a garden, window box or even pot plants, nature has a way of doing that.

The light is fading now, I’ve filled a second leaf compost bin, my back is aching, but it’s a good day. Oh no! I’ve forgotten to feed the ericaceous pots with liquid feed to ensure I get Camelia blooms in spring … gotta go! 🙂

A week in the life …

Those who have followed our story will understand the challenges our son faces. A theme I use is ‘a day in the life‘ to write about how he deals with such challenges. As his condition means that each day is like stating again for him and all memories need to be rebuilt from scratch, I have often though my theme would better reflect his health if I call it ‘a life in a day’.

This week is no different to others, but for the number of medical appointments he needed to attend.

Annual Flu jab, done! Annual health assessment, done, eye test and optical health check, done. These appointments have been planned for some weeks and entered onto his picture diary, allowing us to talk about each one in the extreme detail that our sons autistic mind demands. Gradually, the acceptance of the appointment became less of a fear and we were able to accomplish each one without too much issue.

That is except for the required appointment today. At our sons health assessment, we raised our concern about a ‘mole‘ that we believe has changed shape and texture. It is suspected from todays appointment that our son has developed a Melanoma. A biopsy is being appraised and we have to wait on the verdict. We believe we have caught it early but we also wonder how much more our son is going to have to endure.

In writing this blog post, I do so with a message to everyone who reads it. Please don’t neglect any aspect of your health that may be different. A new and continuous cough. A mole or spot that changes or weeps. Maybe even screening appointments. Eye tests, hearing tests. In our sons case we make sure he has regular check ups. He is unable to manage his health himself and we need to be aware of everything which may affect him. We also ensure our own health screening is up to date as our son depends upon ourselves and we need to remain fit and healthy. Are you in a similar situation? it is easy to put off these things, but even with the pandemic all around us, it is essential to spot illness early and have them dealt with.

As with our sons eye test this week when he had a seizure at the opticians, he also had a seizure as we were in the clinic investigating this melanoma, Our son and myself were supported on both occasions which is so helpful and tomorrow is a lazy day and an opportunity for him to spend quiet time processing all that has taken place this week.

A splash of colour …

… anywhere in the garden is such a welcome sight right now. All my bravado through the spring and summer over the amount of colour we have, comes crashing down when autumn arrives as flower after flower begins to fade and die. So few remain. But they are there and the geranium Rozanne, planted earlier in the year has grown well, establishing strong roots and now creeping so beautifully entwining itself throughout the borders. Flowers looking fresh and alive even through the torrential rain and buffeting winds.

Heleborus Niger is another winter favourite. Commonly known as the Christmas Rose, its pure white flowers already opening, but will remain until well after Christmas.

Poor sunlight and shorter days work against many flowers, but if we look hard, and often underneath the evergreen leaves from those plants with evergreen foliage, the secret garden of winter colour can still be be found.

Oriental grasses, in our case this Pennisetum – Red Head is now fading. The purple feathery flowers which have been with us for some time, and the leaves are all fading. It is deciduous and eventually it will be cut down, but I will leave them as features as long as they remain architecturally striking with frosts and snow covering them. Sadly we do get a lot of rain and when the dead leaves become sodden and limp, they look far better cut back in readiness for next years growth.

Another day raking up fallen leaves. A job which I need to do to ensure the lawns are free from damaging sodden leaves that will just create die back if left. Those fallen on the borders are less of an issue as they will rot down and improve the soil but I need to ensure that any which lie there are not restricting light or air from early flowering bulbs and flowers which may suffer if left. Even here it is better to clear the leaves and reintroduce them to the boarder as well composted mulch and placed around the plants.

White Rabbit …

Tradition holds that the first words you should speak at the start of a new month is, “white rabbit, white rabbit, white rabbit” Do this, and you will have good luck and fortune all month. Or so they say. Of uncertain origins, it is felt that it is linked to farming as farmers will use it for a good harvest.

We always try and remember to do this, but more often than not, we forget! Instead, we do try to maintain a positive outlook throughout each month and eagerly look for opportunities for excitement and adventure. Those little things that will bring a smile to a troubled face and we can say to ourselves, ‘That’ll do’

Today’s garden has been a washout. Torrential rain throughout and howling winds. Leaves are falling all over in varying shades of yellow and brown. Two days of dry weather is all I need to get out with the lawn rake and collect them all. In truth, I need to do this daily now until all the leaves currently on the deciduous trees have fallen. Easier said than done, but I stand ready for that break in the weather.

There are gardeners who would complain at falling leaves and the clearing up they need but in our case, we use this natural event to help find those smiles. When it’s dry, I will get outdoors into the garden with our son, looking up into the sky I will push him round in his wheel chair and try and catch each one as they fall over us, When we can’t move around, we just sit and let them fall on us. The big ones, the little ones, the yellow, the brown, even those which are still green, stuffing them all into bags to turn into leaf mould and use to mulch and feed the following years soil.

Even when it rains and we cant get out, we can look outside through our sons favourite windows and watch them falling. Looking out across the decking we can focus our sons mind away from his torment and count the number of different coloured leaves that lie all around. Even the raindrops running down the window can bring a smile as we follow each one as they run down the window. We create races with them and we run our fingers along the path they take.

November heralds the start of Advent on 28th and our plans also move towards Christmas. A challenging time due to all the changes in our sons routine. In future posts I’ll explain how we ensure he enjoys the surprises of the festivities, rather than fearing them as many people who have autism do. I will also explain how Christmas Carols and the church service also help create a calmness in his mind and a peace in his heart.

White Rabbit? It’s a bit of fun, but the understanding and awareness of family love creates all the luck and fortune we need.

As the clocks go back …

Saturday night, or the early hours of Sunday morning on 30th – 31st October, in the UK we turn our clocks back one hour.

I’m not sure why, but I always recall the short poem “Time marches on, but falls back” when I recall which way to turn the clock. Of course, the UK has stopped using the term ‘Fall’ replacing it with ‘Autumn’ – but that doesn’t work for the poem to flow!

It’s raining again outside. Broken now and then by some sunlight, but the weather fronts have been bringing torrential rain across the country.

I think back almost two years now to October 2019 and recall how we were all completely oblivious to the pandemic that was about to hit the world. We fell unwell at the beginning of 2020. COVID-19 was still an unspoken of virus, but we believe we had been struck by it. Myself and my wife were seriously unwell for a couple of weeks and our son was affected for nearer six weeks. Only when we had recovered we began to hear of COVID-19. To date, we have lost five family members to this awful virus and as I write this article, three family members are battling the virus, even after being double jabbed.

Throughout 2020 and 2021 we have shielded ourselves as best we could to protect our son who is considered vulnerable. We have all be vaccinated and awaiting our booster jab, sometime – we hope – in November. Flu jabs are scheduled in the next week and we continue to wear face masks when outside.

I’m sure nobody has really understood the impact of lockdown and isolation on many people and the consequences will be realised over the months and even years to come. Our son has amongst other conditions, autism. You may know already that a person with autism will likely need routine and a strict repetitive schedule to follow to allow them to understand and process their way through each day.

At the beginning of 2020 when the first national lockdown was announced, I thought it would not be too bad for our son as he spends a lot of time at home engaged with his regular activities anyway. I had not realised the impact of not going for a small shopping trip with me to the local supermarket. One shopper per trolley was the order. Shops became a focus of infection and so I reduced my shopping trips to once a week only to minimise the risk of infection. Then there was a regular cup of coffee at the local garden centre, now closed. These seemingly little trips were in fact a key part of our sons routine.

We tried to help our son to understand why the sudden changes and using all the techniques and interventions we have learned over the years we had reached a point where that part of his routine had been forgotten, and replaced with something new. Not least, working with me in the garden.

As lockdowns have now eased, and restrictions to our liberty not as stringent as they once were, the reverse of the problems our son had understanding he could not do something as he was able to reengage with the world again. Fear of going outdoors is very real. It’s not just the going out, but the visiting a supermarket or garden centre once again are scary trips for him and as face coverings are still required, our sons apprehension is very real. He prefers to remain isolated and in his words ‘safe’.

In time we will encourage him to do these things with confidence, but it can’t be rushed. The pandemic is certainly not yet over either. There is still a possibility that some degree of restriction could be put back in place. we keep this in mind as we encourage our son as to have all our plans stopped once again will cause significant confusion and anxiety.

We may one day learn to live more safely with this COVID-19 virus as we do with the annual FLU and common cold viruses, but the fall out from the pandemic will last for many years while fragile minds such as our sons gradually, very gradually learn to deal with the changes imposed upon them.

As clocks go back by one hour, I wonder how it would be if we could turn them back two years with all we know now.

If I can offer a thought for you and that is that you, yourself, or a family member, friend or neighbour may be struggling in the same way our son is. Reach out and ask for help if you need to, or reach out offering help to those who do, even if you are ok. A friendly voice may be something that is needed by many right now.