Happy Christmas

happy-christmas-v2Christmas is a time for fun and laughter, remembrance and prayer. We enjoy the period as if we are all still youg children ourselves, full of expectation. We are in total wonder at the decorated Christmas trees, the sparkling street lights, the carol singing and church decorations, the hustle bustle of Christmas shopping, and even making our own gifts for those special people in our lives.

This rise in festive activity and the surprises, as yet, secret and unknown, can also become a challenge to those with Autism. We have learned a lot over the last twelve months and now we understand that our son does not see and feel the Christmas experience as we do.

Crowds of people all milling about going about their business, noise from music or shouting, even singing and smells like that of warmed mince pies or mulled wine, these all become a blur of sight and sound that make no sense to him and and quickly become a sensory overload. Even the expectation of a surprise to unwrap on Christmas morning can become a frightening experience of not knowing and therefore …… terror!

Meltdowns are not uncommon among those who have Autism, and care needs to be applied to ensure the excitement shared by the rest of us can in some way be shared by them. We have included our son in all plans and purchases, he has seen his gifts already, helped wrap them and put them away and so he knows what is coming on Christmas morning. He will be no less excited, but (hopefully) not fearful about opening something he is not prepared for. The beauty of this, is that we can now include the odd small suprise too, as his focus will be on the main gifts that he is prepared for. He has joined me in shopping in good time when it’s quieter, to select the food we will eat and drinks we will drink and we have written up a menue with pictures so he knows what to expect when we eat our Christmas dinner.

Our son is 30. Please don’t think that just because a child becomes adult, then all challenges like Autism and Learning disabilities just stop. They don’t, and in many ways, they become far more difficult to support.

If you know someone who has Autism, or other Mental Health condition, please don’t judge them harshly if they behave differently than you would expect at Christmas or other celebratory event. Surprises to them can very easily create significant fear of the unknown and the basic human ‘Fight or Flight’ behaviour may kick in. Keep calm, take time to listen to them carefully, talk in simple clear words, don’t ask questions, but direct them calmly and allow them time to come to terms with whatever has alarmed them. They will recover. Do not fear them, or complain about them, love them unconditionally and support them completely and you will all have a very Merry Christmas. Remember always, that any adverse behaviour you may experience from them, is not personal, and they are unable to change how they are feeling, it is we that have to create a suitable environment for them to enjoy it as much as ourselves.

Merry Christmas everyone and thank you for following our journey, I hope you have been able to take something, no matter how small from the journey we have been on to help in your own journey.

When Irish eyes are smiling!

When Irish eyes smile ...

When Irish eyes smile …

The image is the clue, but the story is significant and the lyrics to the song mean so much more than a traditional Irish song.

We were regular theatre goers, and have, as a family seen many musicals, artists and pantomimes over the years and something Marc looked forward to with excitement and enthusiasm. Passionate about music, his collection numbers well over a thousand CD’s and he’s tinkered with Keyboard, Harmonica, Guitar and Drums. He has a particular passion for traditional Irish music.

Three years ago that all changed. Through the impact of close family bereavement we learned about Marc’s Autism for the first time at aged [then] 26, as a result of treating a marked increase in seizures with additional anti-epileptic medication. First one, then another, and all failing to arrest the seizures, but all heightening his anxiety, depression, mood swings and general lack of interest in anything, fearful of leaving home and seriously sensitive to sound, smells, lights and touch. All our lives were on hold, trying to mourn the recent loss of loved ones, and also trying to support and understand [what we thought] deteriorating health conditions in our son. With the support of understanding Neurologist and Mental Health practitioner we we able to diagnose Autism and amend anti-epileptic medication which eased the extremes of his tormented mind.

Over the years we have learned to understand Autism [at least as best we can] understood how to plan, respond, prepare, communicate. We have Lapsed time clocks, picture diaries, social stories, strict routines, sensory calming lights, sounds and smells, indoors and out. We have learned to see the start of a melt down and what interventions to apply, reassure when it’s needed, direction continuously and discussion with focus on the positive and fun.

Today we took the journey to the theatre to see Foster and Allen, an Irish duo who have been entertaining for over 40 years and, one of Marc’s favourites, singing a range of traditional, humerous and emotional songs.

He loved it, sang along to every song and rocked and jigged in his chair throughout. Today we achieved something , although a small thing, a couple of years ago we thought was beyond us.

Irish eyes certainly smiled at, and for Marc today πŸ™‚

Searching for the Nativity

The NativityWhen October passes and November is upon us, we so look forward to Christmas and all the activities that accompany it.

Typically we will start looking at Christmas decorations for ideas to brighten our own home, from the Homes and Garden stores through to Stately Homes, Theatres and Studios. They all have such great themes, colours and techniques which enrich our own artistic flare.

A favourite for us, is to go to the theatre and Choral shows, over the coming weeks. There is something so special about listening to Christmas Carols and the Christmas Church Service that helps rest our sons mind and terrors, even for a short period. Planning carefully on how we get to the event is key, but once the singing begins and music can be heard, fear and anxiety just disappear.

Marc enjoys looking for, and hearing the story of the Nativity, and we look for those settings where we can. We add in a visit to see ‘live’ animals so the association can be easier between what the livestock surrounding the manger represents, and by the time we have enjoyed choral shows, church services and farms, his understanding and appreciation is better. We do this, knowing it will all be forgotten by next year, but we will go through a similar process each year, so the spiritual meaning of Christmas is kept precious.

In 30 days, the treat of opening a window in his Advent Calendar each day, begins with eager anticipation πŸ™‚

Have a Happy November!


‘Secret Seven’

Secret Seven Herbs

Secret Seven Herbs

As we pull together our sensory garden, we have selected seven plants and herbs that will serve not only to create an aromatic scent in the air but we can also use them in our cooking, and allow sensory exploration by touch and smell.

Grown in seven large pots these will grown quite happily for a couple of years when we will look to split them and create additional pots for the senses to enjoy.

Whether or not you’re a foodie who uses only fresh ingredients in the kitchen, or like us you are also using herbs in a sensory manner, these are which I feel you can not be without.

Rosemary, Sage, Oregano, Parsley, Thyme, Chive and Lavender.

All are sun loving plants with the exception of Parsley which needs partial shade and all will be happy in pots for many years, though you may find Parsley is best sown every year.

Creating the pots together is a fun activity and watch them grow, cut and eat will become quite an interactive treat.

Autumn sun

Autumn sun casts its magic

Autumn sun casts its magic

It was a beautiful day, this day. The sun shone throughout, allowing us once again to enjoy our garden.

We packed a picnic (always have a picnic – even in the garden) grabbed the radio and some books and we just enjoyed the garden. Its many remaining colours and lingering perfumes and scents. Watching the Bees and Butterflies – and cats watching them – and basking calmly in each others company.

A sensory experience we all benefit from, listening to music, the breeze rustling through leaves, Bees gathering pollen and singing their buzzing songs, our cats purring at our feet – with one eye on everything that moves – the sights of colourful flower petals, even in this late summer, the garden is in full bloom, all the flowers dancing and swaying in the breeze, the aroma and scents from Lavender, Thyme, Sweet Peas, Roses and others. Most importantly, our own sounds of family chatter with each other.

Watching, as the sun cast its shadows across the great outdoors, and the afternoon chill brought to an end this beautiful day outdoors and we went back indoors hoping for another sunlit day the following day.

I hope you all had an equally lovely day πŸ™‚

Quiet days

Quiet Time

Quiet Time

There are moments, and even whole days, when just sitting is all that we do. It usually follows an active day and time is then needed to sit, process and contemplate what we did through the earlier hours.

Our son has times like this, perhaps more than he used to! or have we just become more sensitive to his subtle changes? It doesn’t really matter. We are here alongside him as he works through this ‘quiet time’ at his own pace. Occasionally speaking, or questioning, but for the most part, quiet. Not answering our approaches to him, we know him well enough now to sense his need, even in the silence.Β  At times like this, we have learned to remain quiet ourselves, and just get on with our home based activities and hobbies, reading, processing pictures from earlier photo runs. We find we can’t go into the garden when he is like this and for his own safety, we need to be in the same room in case of a seizure or fall.

Over the years, we have built up a large collection of books, records and CD’s, DVD’s (and Cat’s πŸ™‚ ) and learned to use the internet reasonably well as an alternate to having to go out – just for times like this, when you don’t know until it happens, if you are going to be able to go out or not. Thank heavens for Internet grocery shopping and the reasonably successful way they manage it now.

These times do pass, more quickly now than they used to, and although we encourage and try to bring focus and objective throughout each of these days, we have learned not to push, and gradually his mood changes and he returns to his usual ways.

Our studies have taken us to more reading and discussions with authoritative sources, in the hope we can understand, and anticipate more as aspects of his Autism just seem so intense at the moment. Recently a Mental Health Practitioner asked him, “What makes you happy?” and there was no reply. Absolute silence. We know he is happy and we have real belly laughs from him and a desire to go certain places and meet certain people, and he is happy doing certain things such as his music, but we have to learn how to help focus on those happy times and how to help him recall them as easy as he does those sad and angry memories. Our photography project “My world, through my own eyes” is an attempt to support this by providing a means for him to recall what he did and saw – and even photographed himself. Other collages in his photo album is another way of capturing ‘happy’ moments so we can work on embedding these thoughts in his mind at the expense of the negative ones.

Tomorrow will be another day, probably happier and more interactive. We have plans. These plans are flexible by necessity, but they will add opportunity and experience of something new if we achieve them.

We were once told, that it is trial and error and will continue to be, as Autism is a lifelong challenge that faces us, and our son, but together, we will find that way to make his life as fulfilling as we can.

Time …. and patience

Allow time and be patient

Allow time and be patient

When times are good, full of laughter and enthusiastically taking part in a variety of activities, it is easy to forget, that this does not mean his mind terrors and anxieties have been cured. The slightest of things can still be the cause of a meltdown, and sadly, succumbing to complacency we fail to recognise the torment we cause with too much, too soon, and forgetting the rules and routines we must live by.

Autism is a condition that is lifelong, and recent difficulties have reminded us of that fact as we once again allow time, and provide patience and support to ease his troubled and frightened mind.

It can be a difficult journey, and one where, as parents we must not let our guard down and continue to choose the right path to follow, even if it is the quieter path, and the results will be greater for us all.

For now, a couple of days of calm, in the safety of home, doing the things he is familiar with, and we will recover once again. πŸ™‚

Yes, we can!

My world, through my own eyes

My world, through my own eyes

As a parent of a son with disabilities, I often wonder what interests he may develop, or activities he may like to be involved with. We also wonder, what can he manage, with the complex multiple disabilities he has to contend with.

Having these conditions from birth, our son is unaware of how it would be if he were ‘able bodied’ as he has not experienced life that way. He is ‘normal’ for him, and happy in his own way. Our role as parents and guardians, is to ensure that he sees and experiences as much as he can, and as wide a range of stimuli as possible. With this in mind, it is important that we understand, and our son understands, what he doesn’t enjoy, equally as much as that which he does. It gives a valuable lesson in likes and dislikes as much as stimulating the mind.

One of the activities our son has watched as I develop my own hobby, is photography. We use the pictures to create social stories, memory boards and reminders of things we have done, and places we have seen. Increasingly our son has shown an interest in ‘telling’ me what pictures to take.for him. The idea grew to set up his own camera, together with a tripod holding his own camera in a position that he can use from his wheelchair and operate the shutter all with one hand.

This photography kit comes with us each time we go out now as well as the much loved ‘picnic’ and now has his little piece of independence to take his own pictures. I leave these pretty much as captured and just crop and title them so he can use these images to create his own social stories.

Β It is another lesson for me that ‘there is always a way’ and enabled to share in an interest together with me. It may not last, but for now, it encourages him to get outdoors into the fresh air, and to learn the basics of a new skill. Other than in this blog, I’m looking to see if I can find somewhere for his work to be used (once he has become more prolific) so he feels there is also a greater purpose behind it.

For those contacts who follow my own work on ‘Flickr’ I owe a huge debt of gratitude, for getting behind our sons work and giving him the encouragement to keep it up.

I will in time create a gallery based on his work to share his journey with you here.

Crying in the rain …

I do my crying in the rain ...

I do my crying in the rain …

Beautiful things, such as a blooming rose, can hold raindrops that appear as tears. They can also appear as jewels, enhancing the flowers appearance even more as they sparkle.

I have shed many a tear over the last couple of years as we have watched our son struggle through the terrors that have ripped through his mind and the frustrations we have encountered just trying to get through the day. I hide the way I feel, as to see such tears would cause him further distress as he struggles to understand why.

Today, I had to hide my face again, not through tears of distress or sadness, but with bursting pride, that I actually wanted to shout out loud and rejoice.

Today we returned to a venue where we have had to stay away from for a long time. A social lounge, provided for those with additional needs to access with their carers, and share a coffee or lunch and to be able to network with friends and people also with disabilities . We had avoided it because of the noise, the crowds, the hustle and bustle, which were all affecting our sons sensitivities in such a negative way. But today he asked to go and visit again.

We planned to drop in for a coffee (actually it was tea) and then leave, but he was greeted so friendly by those organising the venue and some of those users who he knows, stressing they had missed him, and delighted to see him, we ended up stopping for lunch and endless conversations with people who just wanted to catch up.

We were armed with sound blocking headphones (just in case) and planned a wheelchair ready exit (just in case) music had been lowered just for him and I have to admit to being surprised, yet so delighted these interventions were not needed and our son initiated conversations, ordering his meal and paying for it, all unprompted and with such enthusiasm. We stayed for a few hours and left smiling.

Maybe it was just to see him enjoy himself, maybe it was just a relief that we hadn’t encounter a similar situation to the last event we attended, but tears just ran down my face as today I saw signs of our sons old character return.

Some things we achieve may seem so small and to may, insignificant, but there are those people out there, who for some do find small things like this a huge challenge. All it takes is a little consideration and understanding and the world can change for a person and their wellbeing is suddenly given such a boost.

Thank you to all those involved, whether or not you know it, you have changed the world for our son today, and that is priceless πŸ™‚


All it takes is a little patience

All it takes is a little patience

In the summer of 2012, the Paralympics in London were considered to be a significant springboard for the understanding of disability, and the genuine desire for inclusive activity, be it sport or business or in fact anything where a little consideration and reasonable adjustment is required. We had a legacy from those games, which brought so much to so many through this event.

In the summer of 2016, I come to wonder what happened from then to now, and question the attitudes, once seen as so important, to one today where we find the return of ignorance and even resentment towards those with a disability.

It pains me greatly when I see or hear those with a disability ‘demanding’ this and ‘demanding’ that and I think how much more they would achieve by courtesy and politeness. This attitude is gathering more and more resentment and frankly, I can see why.

However, I recently attended an event. It was a pre-booked event in support of Austism. As my son has Autism – diagnosed at age 29 – we were looking for all the help, information and support we could find. I arrived at the venue with my son, who is also a wheelchair user to a mass of people, all milling about going about their business, even only half an hour after opening! The event was clearly popular and had many speakers and businesses promoting their particular specialism and I must applaud the organisers for pulling this together. Many of those who attended, were obviously teachers, business providers, local authorities as well as parents and even people with Autism themselves. As we tried to wheel around the venue, we were tutted at, cursed for taking up space argued with and insulted and just blocked from getting places we needed to.

Frankly, I was appalled that so many people, involved with and attending an event in support of disability could act and behave so easily in this way.

In that moment, I could understand why those disabled do ‘Demand’, as on this day being courteous was achieving nothing and we were made to feel so insignificant among these so called ‘professionals’ who will no doubt return to their business and profess a caring and supportive organisation.

The legacy of understanding and tolerance from 2012 is well and truly lost and clearly there is a significant erosion of the goodwill, and in some cases obligations to support disabled in an inclusive society.

Those who know me will know that it is not my style to ‘rant’, but I was hurt by this experience, and my son could not enjoy what should have been finding out new things and meeting new people, and I had to bring him out before he had a meltdown. I fear for his future without us as his Parent Carers and need to find a way to recapture a lost dream of that inclusive society, without the need to ‘just do it ourselves’.

My message to those who read this and have experienced anything similar is not to give in to the same behaviours, look for those aspects that works and then refocus your energies into trying to motivate change. For example, this was an excellent event in itself, and I am in dialogue now suggesting that next time they have a couple of hours of ‘limited admittance’ or ‘wheelchair only’ periods, like some other venues, which would have avoided the conflict we experienced. If I get a positive response, or even a response, I will consider this a success.