A day in the life … – Page 3 – The Resilient Gardener

Scared …

Standing while a loved one shouts and screams at you, occasionally lashing out and hitting you. Such a force of rage, brewed up in an instant, and you are the target for all that venom.

What do you do?

You try to offer a word of defence or challenge their point of view, and the effect is like pouring water on a fire of oil. The rage erupts into greater ferocity, eyes straining in their sockets, bloodshot from the strains of anger and hatred.

What do you do?

You try to hold the flaying arms as they continually lash out at you, but your touch is reacted to as if you have seared their arms with branding irons. The rage erupts yet further.

What do you do? …

Answer = Remain Calm …

Experience has taught me. This reaction is passing. In time, it may not even be remembered. It is not personal. It is just a reaction to a situation. I aim to understand what that situation was. It could be that a spoken word has caused confusion, and his autistic mind cannot process what that word means. Panic has therefore set in. Fight or flight has set in. It could be that a smell, or a sound, or even the sensation of touch, or taste, has given rise to a hypersensitivity overload which triggers a need to defend against.

Can you stand in the face of that outrage and aggression? Ensure that he is (s)afe and can do no harm to himself. Reduce the level of stimulation from all sources. Can you ensure you are aware that you are intervening on behalf of a terrified person who needs your help and understanding? Can you remain (c)alm in the face of this attack? Can you find a way to empathise with this person, speaking softly and understandingly? (A)ffirm that you hear what they are saying, even if you disagree. Can you understand their requirement for (r)outine and guide them towards those familiar and safe places and activities? Through the ongoing rage, can you find a way to (e)mpathise with them? Demonstrating you’re in support and not in conflict with them. Have you understood yet what triggered this rage in the first place? An understanding that will help you (d)evelop a plan to prevent it next time.

Would you be able to understand that the person in front of you with such aggression and anger is SCARED? And needs your help.

You want to hug them, but can’t, as the sensation of being held at that moment would aggravate their sensitivities. Feelings of being trapped and constrained. You want to look them in the eye, but eye contact would be seen as threatening. You must guide them from a distance and stand with them until they calm down. When they do, then you can reach out and hold them. Comforting them as you always have and demonstrating your unconditional love for them.

Do you understand the difference between a meltdown and a tantrum?

Behind the scenes …

It was only a few years after Marc was born, and we had learned about some of his health challenges, but at that time, by no means all, Marc’s late maternal grandfather emotionally announced that he was going to write a book about Marc.

We had no idea what he intended to write, and in truth, I knew him more for writing poetry rather than a story. He was a proud Scot and was never phased by any of the illnesses Marc suffered from. Sadly, he passed away before he put pen to paper, and we will never now know what he had mentally scoped out to write.

That may well have been my initial inspiration to write, contemplating what a story based on Marc’s challenging life could have been like. Since then, I have written unrelated technical articles for my workplace and contributed more associated pieces to the National Autistic Society about Marc’s struggles with autism and how we found ways to support him, even before we knew he was autistic. The diagnosis did not arrive until his late twenties, but once it did, it clarified much of the difficulty he faced in his early years.

As I put pen to paper (so to speak), encouraged also by many here, and I started to write my memoir, I did not think about Marc’s grandfather’s wish to write. It was not until I was about halfway through that I remembered those conversations I had with him.

I do not know if the book I wrote is anything like what he had hoped to write, and I never will, but I do hope that, in some way, it would have made him proud and that he would be pleased with what I have created.

Pond in pots …

Apprehension and fear of the unknown are very real for a person living with autism. Often, they rely on strict routines and need to understand exactly what is happening or going to happen. Failure to grasp this can lead to their increased anxiety, and because of delayed processing abilities, attempting to comprehend these changes quickly—which are typical of the condition—can result in a cognitive meltdown. This meltdown may leave deeply embedded fears that resurface whenever anything similar occurs.

I learnt this lesson when I tried to include our son, Marc, in creating a pond in a pot for him to look out upon from his favourite window. I encouraged him to fill the pot with rainwater from the water butt. He eagerly grasped the watering can and filled it, covering everything and everyone else as he did!

Then I asked him to place a couple of bricks into the pot, onto which we would stand the plants. He froze. What I had not realised was that the water he had just filled now reflected the sky and the surrounding scene like a mirror, and he could not see into the pot. Filled with fear of what was now hidden from him, he would do nothing else until I placed the first brick into the water, and my doing so broke the reflection on the water, and he could once again see into the pot.

Calmed by this simple act, Marc continued to help me create his pot, happy that there were no hidden terrors. No meltdown, but an absolute lesson in understanding how autism can impact a person through everyday activities.

I have written about this example of supporting our son who has autism, among other conditions, and explain various interventions in my debut memoir, Marc’s Garden.

A Garden Safari …

As the restoration of our garden is continuing in full swing, I encouraged Marc to join me on a ‘Garden Safari’ to see what we could see.

This caterpillar caught his sharp eyes way before mine, eating its way through the leaves of the Alchemilla mollis. (Lady’s Mantle)

I am always amazed how sharp his eyes are given his peripheral blindness and virtually no sight in his right eye, but splashes of colour stand out to him and even the smallest splash attracts him.

We watched this caterpillar for a while, and then he took my camera to capture a picture.

I believe this is the Vapourer caterpillar (Orgyia antiqua) A moth and serious pest to street trees. I also understand that its hairs can be toxic, potentially causing irritation if touching the skin, so we leave it alone to go about its thing, and came inside to track it down in our books.

It’s a small thing, but it is an activity that encourages Marc outdoors and over the threshold. His world continues to be fraught with anxiety and the fear of the unknown. Little by little we are succeeding in opening his world to see more and importantly stimulating his mind. That stimulation in turn helps to calm some of those fears.

A little homebased adventure … and a smile :-))

In Marc’s Garden …

The Geranium Rozanne, is a perennial flower with such a delicate shade of blue.

Our garden has been created around such colours as this flower as a basis for our sensory approach of gardening to support our son.

Plagued with autism based anxieties and epilepsy generated pain, the blue, if I capture his limited imagination properly, can help calm his fears, and when we sit outside in the light, falling rain, I can take his mind off the pain he feels and accept the lightly falling rain on his face by encouraging him to look up into the sky with me as it falls, just as it covers this flower, so it covers our faces too.

The garden has been, and continues to be instrumental is supporting him through his complex health conditions. the blue of the geranium is a welcome sight this month as it appears in the borders and encourages our son to step over the threshold to look closer.

Setbacks …

In November of last year, I took Marc to hospital on three consecutive days during a time when he had a 48-hour EEG. We had to wait until this week before his neurologist met with us to give us feedback and agree a future plan of action.

We arrived and entered the consultation only to be told, “The EEG had not been sent to the appropriate department to report on!”

Oh my word! Why does life have to be so challenging, and supporting our son be so difficult. It was escalated and “in due course” we will get a letter, but the opportunity to discuss any changes was lost.

I became more irritated when the neurologist, a specialist in epilepsy, suggested that some of Marc’s traits may not be epilepsy related.

“What? How can you say that?”

I was told that from what the neurologist had seen from the EEG – even though it had not been analysed – there was no recorded abnormal electrical activity in his brain at the time.

Even I know that an EEG only traces activity on the surface of the brain, and not deep within the brain. That requires a different more intrusive test. I also know that a standard EEG will often not pick up certain seizures such a Absences or activity from the Hypothalamus.

I know what our son is going through every day and what we need to do to support him. I also know what previous neurologist have told us and do not know why that knowledge and the detailed records that I keep is just being dismissed.

A case of ‘Computer says No and so its dismissed’ if ever I heard it.

Why does it need to be such a battle?

I have demanded a second opinion and raised my dissatisfaction at such a delay in the EEG being properly reported on, as you would imagine.

Marc’s Window …

So much time has passed since Marc was motivated to embark upon our ‘Marc’s Window’ project, that it may be prudent to explain it to those who are new to my posts.

Living his life with, amongst other conditions, severe autism, Marc finds comfort and safety in the routine. It’s not just essential; it’s his lifeline. Any deviation from this routine can trigger intense anxiety, leading to meltdowns. This fear of anything different is not just a preference; it’s a very real and extreme reaction.

That fear prevents him from stepping over the threshold of our home – his safe area – due to his anxiety about different scenes, environments, people and activities. A person with autism may find interacting with others difficult as social awareness has not been developed, and they become very withdrawn.

I encouraged Marc to look out of his ‘window’, and we would talk about everything we could see. The colours, the buildings in the nearby hamlet, the wildlife that came into view, and our garden. It was a world he could look upon from the safety of his room, and I could encourage him to venture outside, firstly into our garden, then in his wheelchair the short distance to the hamlet. We spoke about going a little further afield each time we did to see something new.

When Marc picked up a camera, it was a turning point. I set it up on a tripod, positioned to take portrait pictures to allow him to use the shutter button with ease – he has a paralysis to his right side – and he could look through the ‘live view’ screen to see what he was pointing the camera at. The joy he felt at seeing his pictures was palpable, and he wanted to take more. This enthusiasm not only rekindled his interest but also opened up new avenues for us to explore. Each picture he took became a basis for a conversation, encouraging more adventures and helping him recall lost memories.

With Marc’s epilepsy worsening of late, he lost interest in this and most things. With patience and a better understanding of his mind and outlook, I have encouraged him to start where it all began and take his first picture in a long time from his bedroom window, where he feels safe and sees familiar sights and activities.

Thank you for looking at his work and for sharing our son’s journey and story with us. Your support and understanding mean the world to us.

It Burns …

I wrote in my forthcoming memoir of the day our son was born,

” …my son was in isolation and an incubator with so many wires attached to him he could have passed as a cyborg – some form of artificial life …”

Thirty-seven years later, he remains wired up, and those memories of his traumatic birth come flooding back.

Over several days, we received news that correcting the pain for his hemiplegia would be too much and would have many complications and consequences. The advice was not to have any surgical treatment but to rely on supportive orthotics until he becomes a permanent wheelchair user.

The wires relate to a multi-day EEG, and video recording, to assess his brain activity. His new neurologist hopes that she can identify exactly which parts of his damaged brain are triggering the seizures and maybe, just maybe, a new look at his medication and what is available could target specific areas identified and ease his torment. He has what is classed as generalised onset epilepsy, which, in essence, means that the whole brain is triggering the attacks. But we wait and see what the results show with fingers crossed for something to grasp hold of.

The source of his complaining about pain became apparent as the bandages were removed from his forehead, and ugly blisters were where the electrode had been. He had been burnt!

I had no idea there was a risk of burning and a reaction to the glue with which the electrodes are applied. As you would expect of me, I investigated and found that up to forty per cent of adults undergoing EEG assessments lasting more than a few hours experience this.

He persevered with it and completed his fifty hours with them. We are now treating the burns, which will heal, but once again, I question my judgment in trying to help him by putting him through so much unpleasantness. I share this as I hope it may enable someone to ask the question I did not. “Is there any risk at all?” I was told ‘no’ and accepted that without challenging it. I now know better.

Take care everyone, keep safe and stay well. :-))

Hearts that break …

His eyes looked up at me. They were sightless. Nothing registered. I spoke to him gently and reassuringly as he was coming out of this awful seizure. There was no response. For several days now, he has been subject to multiple seizures every day, and they are taking their toll on him. After a few minutes, his eyes look into mine once again. He says, “I do not know you”, and my heart breaks.

Memory loss has been increasing recently after these attacks. He has always struggled to reboot his short-term memory. What day is it? What was he doing? Where is he? After a few minutes, his memories would return to a degree, at least.

It took a few minutes, but then he started talking to me as if nothing had happened. I could sense that my presence was as reassuring to him as always, and we sat together until he fully recovered.

Medics tell me that his condition will not get worse. The reality is that which is before me. His epilepsy, autism, and other conditions he suffers from may not ‘technically’ be getting worse, but the toll they are taking on his body and his mind certainly is. Day by day, I am seeing changes in our son that worry me and hurt me, and there seem to be no reassuring answers other than those from prayer.

World Autism Acceptance Week 2nd – 8th April 2024

“Share, connect and engage with supporters to help increase autism acceptance and awareness. Join the online conversation.” National Autistic Society

This week, there is a focus on fundraising to raise vital funds and help create a society that works for autistic people. That much is true, but in my experience, the focus this week and every week needs to be on creating awareness of what autism is, how it affects the individual with the condition, and how it impacts those around them.

There remains a widespread media focus on the high-functioning end of the autism spectrum, with individuals explaining how they navigate the world, their relationships, their attention to detail and how they work with their condition.

There remains an absence of media coverage of the more severe aspect of the spectrum. An estimated 60% of individuals with autism are imprisoned or in trouble with the police, not through anything done wrong but more a misunderstanding of words used: Echolalia, sensory-triggered meltdowns, and a lack of social interaction skills.

Similar aspects of autism lead to isolation, depression, and anxiety—a sense of futility and worthlessness. A person with autism, suffering from sensory overload, cannot walk the length of a shopping mall without either curling up in a corner somewhere, trying desperately to hide from all the stimuli or falling into a rage triggered in defence of the sensory attack.

A person at this end of the autism spectrum can suck the life and optimism out of their souls and that of those who are around them and fall into a spiral of misery akin to Dante’s Inferno.

Awareness and understanding of these conditions can help people recover their minds and well-being and bring peace to their world.