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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 🙂

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 café, 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.