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Month: January 2018

Attempts at nurturing

Attempts at nurturing

We have embraced a number of projects on our journey towards gardening for mindfulness, aimed at developing our sons senses of seeing, hearing, feeling and smelling. Through these sensory enhancements, we aim to ease his terrors, calm his mind and give him the tools to help control his random thoughts and concerns. At least to try, without always having to pump medication into him.

Our first project, which is ideal for this time of year, is the sowing and cultivation of tomato seeds. Though our son will not understand some of the detail, we will talk through how the plant has spent the previous season growing and producing the seeds that we are now going to plant, aiming to give him some understanding about these minute little things in the palm of our hands. We will reflect on the fact that each of these seeds holds a leaf, stem and roots that will with his care, grow into a new plant from which we can, with care and attention, grow to give us the tomatoes that we can eat.

A lesson we need to understand, is that we need to ensure we nurture it continually and once we have committed to sow the seeds, we cannot abandon them. We have to give them constant attention, considering their needs to allow them to grow. We will use this analogy in other aspects of relationships and life where constant attention is required to enable growth and health. This is an area that his Autism prevents him from understanding, or indeed wanting to engage with and so we hope this may be a tool to help him.

As with relationships, a plant grows and has differing requirements as it grows, we need to understand that, learn about it and provide it, so that ultimately the plant, and indeed the relationships can reward us by flourishing.

What we nurture, nurtures us in return.

Our chosen Tomato seeds were recommended by a [Flickr] friend and our first Gardening for mindfulness project starts here with ‘Attempts to nurture’

A taste of reality …

A taste of reality …

It hit us all quite hard. On Christmas morning, following a well planned build up to the day. Gifts that were not expected came to light and an extreme burst of anxiety rushed in. “What’s this” … “Where is it from” … “What will I do” … “do I open it” … “Can I leave it” … and many more fears, we can only imagine were terrorising his mind as our son come across them.

A person who has Autism can react in this way and we had learned a couple of years ago, to let our son see what his gifts are, help wrap them up and place them in his Christmas sack. That way, the sudden surprise of something different is avoided and he will be calm and in control as he works through what is expected. Completely forgetting all we had learned, we added a couple of last minute gifts that friends had sent him. Suddenly the bright and cheerful morning turned into one of terror. These two gifts had the effect of creating all his worse nightmares, instantly.

That was 21 days ago. This time, although we have been able to work through the fears and eventually get round to opening the gifts, lasting troubles still plague our son with increased uncontrolled seizures, virtually daily and migraines lasting two or three days. His mobility has worsened, his sleep is increasingly disturbed, he has developed severe shakes and his mood is very dark. “I’m sick of this” … “I’ll stop taking the tablets” … ” I wish it would go away” … “I’m fed up with this” … “It’s pointless” … many words he uses as he has heard elsewhere and his Autism brings out Echolalia which is repeating words that have been heard, ironically often in context, but he has no real understanding of them.

My wife and I have seen a step change and have our own fears knowing that uncontrolled seizures can lead to SUDEP and recently several cases have been reported on in the media, bringing home the similarities of the uncontrolled seizure. We know our sons condition is complex and we know and understand his life expectancy will be shorter. We seem to be facing a period where it is very challenging to enable him to become involved in all those experiences or observations we had hoped. For much of the last 21 days, we have sat calmly in our living room with him. He has not wanted to venture outdoors at all, he has not wanted myself or my wife to leave his side and we can see a genuine fear in his eyes if we need to.

His consultants have been made aware and we are monitoring every thing for them when we see them in a few weeks time.

We turn to God to look for his watching and caring love over our son, and for strength and answers. Sometimes we just as, why? We have never heard the words, “I love you Mum, and Dad” and I guess we never will, but those smiles we get from time to time are always heart felt. Of that we are certain.

Our hands, and faith, are with the medical profession now, soon we will know the next steps we will take and our support will of course adjust and change as our sons needs evolve. We may not ever get to see the sun set or rise on a shoreline, we may not get to fly a plane, but we will do all we can to make sure he remains safe, secure and loved …

 

Eleanor …

Eleanor …

Storm Eleanor was battering us over the last day or two. Not as much damage as feared, though standing structures such as our obelisks have been blown away.

Taking a walk around the garden via the gravel paths, it was clear the amount of rain that has fallen as the lawns are almost lakes, certainly with ponds dotted here and there as the land is sodden and subsoil wet through as well. Not much can be done right now except keeping a watch for any potential damage and keeping an eye on the forecast in the hope a dry spell is coming any time soon.

All however is not lost and at a time when the planted garden is largely resting, there are exceptions as with the Winter Pansy and Primulas. Grown in both garden borders and in posts, they are doing well right now. It is important to keep them from being covered from any fallen leaves which will cause them to rot very quickly and where they appear waterlogged, to clear the water by spiking the ground or even rolling or brushing the surface water away. Primulas like it moist, but not swimming.

Today was the day to look at our new addition for the garden. A Polytunnel Steeple Green house. It’s not too big, but a great introduction to greenhouse gardening. Measuring 143cm wide x 143cm deep x 195cm tall I have – or will have, when it’s assembled – 8 staging shelves and I plan to use this for seeds, propagating existing plants and growing succulents. If successful, I may move on to a full greenhouse. Today was spent checking all the parts were to hand and understanding the assembly instructions.

With a few ‘personalised’ adjustments, this will be a place where I can work on some horticultural projects with our son, irrespective if it rains or not. An access point wide enough for allow a wheel chair through and a special bench seat set up for him to sit on while we sow seeds, propagate cuttings and create bowls and pots. All being well, we will make wreaths together in there next Christmas.

Pause on the threshold …

Pause on the threshold …

We have learned the technique of taking a moment on the threshold to our garden. Rather than just moving into it and getting stuck in to whatever task needs completing. We stop at the five bar garden gate, rest on it with a flask of tea and just take a moment looking at, and then listening to, the garden.

We saw shrubs and roses budding up in the unusual mild weather. We saw spring bulbs bursting through the soil, eager to seek out the sun. We saw the small birds returning to the sunflower heart feeder. We heard the birdsong – not yet experienced enough to identify the many songs – We heard the nearby by trees rustling as the wind begins to get up ahead of a forecast storm. We see the colours of flowers, no longer hidden under fallen leaves, but standing proud in the dull, wet day.

We spent some time there, looking, listening and for a moment, just focusing on breathing the fresh air of outdoors. Talking through each aspect with our son, sat alongside me in his wheelchair and for a moment, his terrors forgotten, he questioned me about the flowers, the grass, the birds.

This moment was interrupted by a neighbour who shouted across, “… your getting wet out there …”  “No” we replied, “we are standing in the rain, looking for rainbows” 🙂

Embracing the new year

Embracing the new year

The chime of the clocks having struck midnight. ‘Auld-lang-syne’ sung. Toast’s made. First Footing, footed and text’s, texted. We went wheel-walking through Queens Park to get some fresh air and stretch our legs.

I think many had the same idea, a lot of people were out, either with Children or walking dogs. It’s always good to see, or guess, what people have received for Christmas. A new bike, a doll and pram, a new phone – wow! so many smartphones. Dog coats, jumpers, leads and collars, everyone had a little something from the receiving of gifts last week.

I hoped to be more positive about my blogs this year, but it is also a record of hopes and fears, and in particular, reality that we can look back on as we seek professional input for our son, but also sharing a sense of reality with anyone who needs to see, they are not alone, if they also have to deal with similar challenges. To that end, I will share that our wheel-walk in the park was short lived as our son was struck, by a particularly unpleasant seizure.

Pushing him in his wheelchair up a hill (as if the timing could have been better) I saw his head an body snap to his left and his body shaking. With some cases of Epilepsy, it is always wise to leave a person having a fit to come out of it themselves due to the incredible strength and random movement can actually do you more harm if you seek to hold them. Making sure they are safe and will not choke and allow them to come around themselves. In our case, I have found our son values being hugged and gradually easing his head and neck back to a front looking position, cradling him until the spasms subside, then the tremors ease and we hold him while his disorientation begins to clear.

I know there are those who must see us in this ‘unusual’ embrace – halfway up a hill, holding onto the wheelchair and adult occupier all together, and decide to walk the opposite direction. Children stare in bewilderment at what they are looking at and all awhile, Lady Bronte is more interested in sniffing the nearest dog or chase the squirrel she has just seen, completely oblivious. In truth, that usual behaviour is appreciated and it keeps us grounded when all things are falling apart.

Ten or fifteen minutes later, our son has recovered sufficiently to begin to move again and my wife leads the way with Lady Bronte back to the car where we have our emergency grab-bag … and the flask of coffee. We take time to drink this – it is medicinal in itself, and then head home.

Maybe 2nd January will be better.