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Author: Paul

Paul Fraser is a parent carer with his wife, to their adult son, who has multiple disabilities and together they strive to enable his access to an inclusive society with experiences as wide as possible and support others in similar situations by sharing their successes, and even failures so others may avoid pitfalls they found
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.

Bringing in the new

Bringing in the new

Sitting, as we watch the closing hours of 2017, quietly contemplating the achievements and journeys throughout the year. Decorations from festivities lie, waiting to be boxed up and put away for another year. Having helped to bring sparkle and enjoyment since the first day of advent. Brought out like old friends, and caringly put up around the home, to transform it into a magical environment.

New additions this year, and lists created for more new additions next year. A light here, a tree there, a bauble, tinsel, candles. All contributing to our celebration of the birth of Jesus.

2018 is fast approaching. Some of our friends are already there, some will see it after we do, but all have contributed to the joy we had, going through and getting through 2017.

It’s good to have plans for the coming year (maybe even resolutions) and even with challenges, where you can’t plan too much too soon, we need to have an idea of what we hope to achieve, so we can make some plans on how to achieve it when the time comes.

We have our garden to work on and further develop the sensory look and feel to it, though I am determined to do less constructing and more ‘mindful’ exploring of it through 2018. I’m hoping to take our son on a journey through colour, scent and touch this year. Use photography to capture his contact with each of well over 200 different flowers we have planted. I will introduce more places to sit and just spend time enjoying what we see, and hear and now we have dealt with the rats, we will re-introduce our bird feeders and watch the many different birds return that we once attracted.

Health permitting, a trip to the Northumbrian coast, including Lindisfarne and the gardens at Alnwick Castle are on our list. Quite a journey, and one that was out of the question this year, but with some gradual preparation, the journey should be manageable. The joy of actually being there will, hopefully help Marc to handle the journey getting there and with frequent stops as we drive along, to picnic and to walk our dog, it should be an enjoyable adventure.

We want to complete and record a few more wheel walks if we can. I need to source a new power chair for him to help. Getting over the threshold of the house remains the biggest challenge, but again, having the plan and working to achieve small steps – or small wheel runs – at a time will be key, catching that moment when all good things come together to allow us to conquer … anything.

It is a year when we are expecting greater challenges for our son to achieve much, but we, as always will work on plan A, B or even C, to allow him to see life and if we need a plan D or E, well, I’ll go through to plan Z if I need to. I hope you enjoy the journey with us and as always, I will share anything we learn along the way.

Have a very Happy New Year and I wish you all, Health, Happiness and Success in 2018 🙂

 

 

A note of thanks

A note of thanks

A note of thanks

It is not often we get to post a picture like this, but throughout the year, my wife and I, as well as our son have been moved by the friendship and support of so many people. People who have become friends ‘on-line’ and from around the world as well as close at hand.

Growing up with complex disabilities our sons learning disabilities have prevented him from achieving the basics of reading and writing, amongst many other things we taken for granted. He will identify key words, not by reading the word, but by recognising the shape and structure of the writing and will attempt to write a few words, such as his name. As a result, we will read to him any written comment or letter and try to use words and metaphors that help him picture what is said.

Suffering, amongst other conditions, from Hydrocephalus, it has been discovered that people with this condition can see lines paper or written words on a page as spirals causing great issues even focusing on a page.

Our son wanted to express his thanks to all those of you who have contributed to his world over the last year, and beyond and we have worked on preparing this note with him, that he has signed to add that personal touch.

Post ….. and Pre!

Post ….. and Pre!

It is incredible how Christmas passes so quickly once it arrives. Maybe too quickly. And as we consider what turned into a very intense day, we are still picking up pieces and holding them together.

Our son needs clear preparation and exposure to all things that will change, so that he gradually becomes accustomed to the changes over a period of time. We thought we had learned so much from the last year or two on how to ease him into such a big event that Christmas is. This proved not to be the case.

As you enjoy the joys of Christmas and preparations for New Year, as well you should. I ask that if you have a member of your family, or even a neighbour or friend that you know struggles in a similar way to our son, please see if they need a little support, or even calm, reassuring company amid all the partying. They may just welcome your contact without having to worry about all the glitz that comes with this season.

We planned, ahead. Looked at decorations before we bought them. Put up a tree without the lights so as to be seen as just another potted plant, we diarised skype calls to greet our distant friends and family, we spoke about what gifts Santa would bring. As our son can no longer manage to get to church, we watched the services on TV, listened to the carols, said our prayers and as the evening grew old, we watched Santa travelling the world on the Norad ‘Track Santa’ web-site. Before we retired for the night, we checked the offerings left for Santa and Rudolph and went to bed.

The following day, Christmas Day, was destined to be too much of a challenge from the outset. A gift too many and unexpected in his Santa sack caused immediate concern, anxiety and mood swing, a planned Skype call had to be postponed …. expectations of what was going to happen, was smashed beyond repair and now four days later, we are just beginning to recover the situation, plan, we hope, for a New Year with as much … ‘business (or life) as usual’ as we can muster.

I know we are not the only family who experience these things and I want to share our experiences in the hope that something in what I say resonates with you and if you know someone who may appear low, they too may have suffered from some sensory overload in much the same way and are desperate for your support. Probably to do nothing, but to be there and reassure them that the world hasn’t begun spinning the opposite way and to encourage them to focus on the ‘usual’ things in their routine.

We will learn again from what happened and next year, hopefully, we will make it special for him.

 

Merry Christmas and a Happy New Year. I wish it a peaceful, healthy and enjoyable 2018 for you.

 

Never Forget

Never Forget

“If you ask me how many times you have crossed my mind, I’d say once because after that, you never left …”

Anonymous

It’s funny how some people just seem to make an impression on you. For whatever the reason, their memory is held and thoughts of them remain with you.

It might be an unexpected kind gesture, a kind act, and encouraging word, empathy or just their personality and character captures your imagination in some way. I’m not referring to that romantic impression – though that works in much the same way, but is not for this blog – but those few people with whom as a parent carer, or cared for individual, you feel immediately comfortable in their presence, or even in distance communication as with a pen friend (as we used to call them) or ‘friended’ and linked through social media in todays world.

I began thinking about this today and that this must also work the other way too – strangely, something I had not thought of before – but I happened to bump into a nurse we had met in a local hospital with our son. She recognised me first and came up asking “where is that lovely young man of yours” We hadn’t seen this lady for many years as she had long since retired and although we still attend the hospital, she is no longer there. We do often say to each other though ‘I wonder if MarieAnne is in’ and why, because she took time with our son and tried to engage with him and brought a smile to his face when we visited.  Our son still talks of her as well, even though it is years since we have seen her.

My day also took me into the local supermarket to get some shopping and though our son was not with me – not so well again – the check-out operator asks me “where is your son today?” and “wish him well from me”. I am touched that he has in some way touched not only these people, but several others as well, who also ask after him, or stop us when we are together and talk to him even though there is not much response. All these people are held somewhere in his mind and heart, and certain triggers will prompt him to talk of them even though they are not there.

The same is true of on-line friends who, through our joint attempts at photography have allowed a number of people to follow and understand our story and although we don’t know you in person, we have come to regard you as friends in the same way. Our son regularly asks if one person or another has written or commented and he too looks to see into your worlds as we talk about your own pictures together.

This post is really to say, “Thank you”. To all those who have never left our minds, thank you for being there. Regardless of our being chatty or quiet, being with you in person or on-line, thank you also for holding our son and ourselves in your minds and offering us such welcome support.

We couldn’t do it without you 🙂

 

 

Tips for caregivers of those with autism

Tips for caregivers of those with autism

As a member of ‘Autism Support Network’ I came across this article, written by Tulika Prasad, and felt I should share it. It did resonate with our own situation and in truth brought a tear to my eye as I read, as it was comforting to see that others do experience what we do. You can read her final paragraph in the link, but for my blog, I rewrote it slightly, to reflect our own position. I would also remind readers that although it appears many articles are written for and about ‘Mums’ of special needs children, ‘Dads’ are also experiencing the very same emotions and frustrations and should not be forgotten. Read yourself into any reference where Mum or Dad is written.

Tips for caregivers of those with autism

Think about the day when you got to hold your little bundle of joy … you promised to protect him forever … to love him and be by his side till the end of the world and beyond … you wished for his eternal happiness … and then he was diagnosed with Autism and something changed. As your child adds age but not milestones, you are soon given a new designation – that of a caregiver.

Your child might be 6, 16 or 26 and he might still need the care and attention of a 6 month old.

As your child grows, he gets stronger while you begin to age and find yourself struggling at things that you found easy to tackle just a few years back. Your stamina falls while your stress level rises. You’ve probably missed out on your social life. You probably look ten-years older than you are because you’re not just physically but also emotionally invested in this process. When the caregiver is also the parent, as is the case with most families with a child on the autism spectrum, the stress is manifold since there is always that looming fear of what the future holds for their child after they are gone. There is that desperation to fix the situation rather than wait it out.

Though it’s easy for people to assume that caregivers are a different species altogether, they are not. They lose patience, they get tired, they feel helpless, and more often than not they are very lonely. It’s a perfect recipe for depression. It’s no surprise then that every other day we read stories of caregivers hurting themselves or the cared-for being hurt. Who is to be blamed here? The person, the society … or the circumstances ? Whatever answer you choose, the bottom line is that it’s about time we had a conversation around the caregivers.

While the world decides on what it can do to make life easier for those who spend their life caring for their loved ones, here are a few tips that might help some of us stay afloat.

1. Get some sleep/rest – Sleep deprivation can play tricks with your brain. It’s important to catch up on your sleep whenever and wherever you can. If you’re missing out on sleep at night, drop everything and take some rest when your child is at school. If that is not an option, try sleeping in your car while your child is at a therapist; let the therapist know you need that nap. They’ll understand. Whatever your schedule, be creative and find a way to get that rest. It will do wonders for you.

2. Respite – Where I live, we get limited free respite services from our county. Find out about a similar service from your county, and use it. Respite providers are trained to take care of special needs.Take that time off to shop, get a massage, go to a cafe, meet friends, go to a movie or a date night or simply sit back home and binge on your favorite serials. Don’t feel guilty about having that time for yourself. Just remember to not use this time for completing chores. Use it for yourself. You deserve it.

3. Invest in your health – Before you know it, all that stress is going to take a toll on your health. And though you may not really care about yourself so much given the enormity of challenges you face everyday, if you want to be around for long to take care of your child and also be of use, you need to be healthy. This is an investment you will not regret. This one is for your child as much as it is for you. Get your full physical done, eat healthy, eat well. Exercise. If you cannot go to a gym, which might be the case for a lot of us, try yoga, pilates and many more exercise that you can do at home. Whenever you can, go for a walk, it will help clear your mind and rejuvenate.

4. Find a place to vent – You will need it. If you’re a social media person, find a group where you can safely vent without being judged. If you prefer a more face-to-face interaction, try a support group, or just that one friend you know will not judge. But find a way to let the steam out. It’s cathartic and it’s important.

5. Cry if you feel like – I try to stay away from a lot of depressing thoughts but they tend to creep up every now and then and fog my mind. Those days I feel helpless, lonely and unappreciated. I fear the future, I resent the present and I feel like running away from everything. This is the time those tears come in handy. A good heartful crying really helps in these situations. It’s not a sign of weakness. It’s a sign of being human. Cry if you must.

6. Laugh out loud – Don’t miss an opportunity to laugh. Even in the most depressing of circumstances life gives you reason to smile. Grab that opportunity and turn it into a laughter. The sound of a hearty laughter can dispel the thickest of clouds and bring in some much needed sunshine. Watch a funny show, share a joke, laugh at a fond memory or just look around and you’ll find a reason.

7. Celebrate more often – You might not always find the success that fits the usual definition but there will be many small victories that will come your way. Learn to celebrate those rather than dwell on the failures. Your child might have just said “mommy,” or have given you a hug for the very first time. He might have tried a new food you did not expect him to or learnt to finally tie his shoelaces or went an entire day without an accident. Go on, give yourself and him a pat on the back for it. It’s your hard work. Celebrate! Caregivers face a lot of challenges and need a lot of persistence. So, when there is a moment to shine, shine up bright and loud.

8. Let go sometime – As a caregiver, it almost gets ingrained in us to be on a constant watch … to be on our toes and to be right there all the time. However, contrary to what you may expect, giving your child some space, letting them be and allowing them to try being independent even if they fail is not always a bad idea. Let them have mismatched socks once in awhile, or eat with their fingers, or not respond to their name or have that extra bit of sugar or watch a little more of the same, or lineup cars , yet again, . Give yourself a break. Let them figure it out once in awhile. Sit back and watch the act sometimes instead of being in the act.

9. Ignore others – You are on your feet the whole day and that one moment you erred and your child ran away from your side in a grocery store, there will be ten people judging how careless a parent you are. People will judge. No matter what you do or say, they will find an opportunity to do so. 100% acceptance and understanding is a Utopian concept. As long as you know in your heart that you are right and doing the best, forget what others say or think or it’s going to get really expensive for you mental and physical health. Get a thick skin and a clear heart.

As an autism [dad], and of course my wife as an autism mum, we’ve seen more days that are exhausting than days that are laid back. we’re always in a state of hypervigilance and mostly for good reason. We’ve very limited friends and we need a lot of planning for even a slight change in routine. Almost everything we do is a chore because we are in that constant fear of a meltdown, or a seizure, or incontinence. In those few minutes that we may take my eyes off of him we’ve could find him contorted with epileptic convulsions or handling something dangerous that will do him more harm. He can never be left unsupervised. I help him change, bathe, clean, eat, toilet, and practically help him with everything he does. He is not a 6 month old. He is almost 31 years old. With him around there is not a dull moment and a ‘walk’ to the couch seems like a very long journey. We probably [hopefully] have many more years ahead of us that we’ll be doing what we do for him now. Maybe not. When we eventually held him for the first time, we promised to be by his side, always and so we will … and to do that we need to take care of ourselves just as much as I take care of him.