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Month: December 2017

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.