Tag: life

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?

About the book …

“Surely, had it [breach presentation] been spotted, additional attention could have been given, Marc’s risk of difficulties in birth would have been known and anticipated, and attention would have been brought sooner for a more successful delivery.

I could have taught him to swim, to dive and enjoy the water. I could have taught him to cycle, cross-country, track or road racing. I could have taught him to play guitar and piano and perform on a stage. I could have taught him to be humble yet respectfully stand his ground. I could have encouraged him to get up and start again when things were not right. I could have held him and cried together as his children, my grandchildren, came into the world. I could have… I know that I could. We would have walked across fells and valleys and walked together through rivers and streams as we followed each rainbow and found the pot of gold at the end of every one of them.

There are times when I grieve for the son we lost. There are times when I truly feel that way. In the early days, I was angered by my feelings. So often, I had wanted to turn to someone to ask, “Was this feeling normal? Was it okay to feel this way?”

Nobody was there to ask.”

(Extract from Marc’s Garden)

***

Opening the brown box with my name on the address label was such a thrill. Reaching in, I pulled out a copy of Marc’s Garden. After what seemed like (and really was) several years spent writing it, and then the inevitable rewriting following edits, I now had hold of my book. Could I call myself an author?

To say that I was thrilled was an understatement.

If you are looking to buy a copy of Marc’s Garden, there have been “technical issues” with Amazon UK making my book available, though they are working on a solution, but it is readily available through Olympia Publishing, Waterstones, Bookshop.org and other good booksellers.

Having completed this part of our journey, there was still an itch that needed scratching. This memoir told of Marc’s journey to a given point in time, that being the pandemic. Already, followers are asking, “What happened next?” In truth, how we encourage Marc to reengage with the world as restrictions were eased is where the next volume starts. “Beyond the Garden” draft is being worked on and I have also had suggestions of including photographs that Marc has taken which I am considering.

Before that comes to fruition, there have been many questions that I have unanswered by medics regarding his health and I found that I needed to explore those questions in what turned out to be my second book, Strange Conflicts which is due for publication soon. It is a fictional story which I hope you will find gripping and leave you asking the question, what if? As I did.

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.