Tuesday, 13 December 2016

Record Breaker!

We've had over 18,000 visits to the blog from all over the world in just 12 days, had hundreds of bids on some wonderful items and as a result we have raised a sensational £7,851, including some lovely donations.

You are all very, very kind people. Massive thanks to all who took part by donating lots, by bidding, by sharing and by donating. Together you will make such a difference to Ben and Finlay's future!

Now, we are going to enjoy Center Parcs and some much needed respite, if you have won, we will be in touch on Saturday. 

Nite all!

Sunday, 11 December 2016

So Here It Is Merry Christmas, Everybody’s Having Fun….. Aren’t They?

Christmas used to be our favourite time of year. We loved everything about it. The whole build up throughout December, the songs, the movies, the presents, the decorations, the parties; we loved it all.

Once we became parents we couldn’t wait to see Christmas through the eyes of a child again. All that excitement about whether Santa will come and visit our house. The joy of ripping open the piles of presents in the morning. The chance to celebrate with friends and family and all come together. December would be a month filled with fun.

Instead, for the last 6 years, we’ve really struggled with this time of year. It’s become a time of very mixed emotions, and even though we want to, we’ve found it really hard to enjoy it. This isn’t helped by it being around Christmas time 2009 that we first suspected something was not ‘normal’ with our boys and our worst fears were finally confirmed with their diagnosis in November 2010.

Why do we struggle?

Autism has meant that Christmas as parents has been nothing like what we expected it to be.

Christmas can be a difficult time for anyone with autism. The change in routine, the sensory overload of the presents and the tree, and the increase in social occasions are but a few reasons.

This will be our 9th Christmas as parents, and throughout December we feel surrounded by the Christmases that we’ve never had.

Instead of being our favourite time of year that we can’t wait for, we find ourselves having to battle against feelings of sadness, anger and jealousy.

Jealous of the Christmases that friends and family all seem to be enjoying with their children.

Sad about the fun and excitement that our boys are missing out on.

Angry at the world that this is what our Christmas is like.

December feels like a month full of events and traditions that we are unable to take part in as a family.
Ben and Finlay have no comprehension of what Christmas is, for them December is just another month of the year, and the 25th is just another day.

There’s no making a list for Santa, telling him what presents you would like. No concept of whether you’ve been naughty or nice.

There’s no trip to see Santa in his grotto. A queue full of other kids to get a present that they have no interest in is not their idea of fun.

There’s no going Christmas shopping and seeing all the lights. The crowds and sensory overload that would bring rules that out.

There’s no fun day decorating the house and putting up the Christmas tree together. Every year we do it knowing that each ornament has to be non-breakable in case they are thrown or bounced. 

There’s no visiting family, or having large get-togethers. Ben and Finlay are comfortable in very few places, so going to see cousins, and friends with their children is a no-no. Plus their carefully decorated house can be completely undone within a matter of minutes.

There’s no Christmas movies. We can’t believe we don’t get to watch Christmas films! We love them and couldn’t wait to sit down and introduce our boys to all of our old favourites, Santa Claus the movie, A Christmas Carol, Elf, the list goes on. Instead, the only Christmas programme we get to enjoy have to involve Tigger and Pooh, Imagination Movers or Special Agent Oso (for the 7,352nd time) If they’re not in it, they’re not interested.

There’s no day out to see a Christmas Panto. Sitting still for more than 2 minutes is difficult, without taking into account all the other sensory problems it would bring.

There’s no talk of Santa. No leaving food out for him on Christmas Eve. No trying to spot him out of the window, or listening for the sounds of sleigh bells in the night.

There’s no waking up in the middle of the night to the sounds of “Has he been?” There’s every chance we’ll be woken up in the night, but it’s for the iPad, not for the presents.

There’s no rushing downstairs in the morning full of excitement at the pile of presents that await them. No huge smiles on their face as they rip the wrapping paper off and find the gift they’ve been hoping for.

Pretty much every picture and idea we had in our heads of what our family Christmases would be like, are yet to materialise.

And we’ve struggled with that each year.

Every film, every advert, every song, every picture on Facebook or Instagram, all portray this perfect family Christmas that we’ve never been able to experience. As much as we still love Christmas we feel like we spend most of December constantly have to fight back these feelings of jealousy, anger, and an overwhelming need to just cry.

The more we write about it the more we realise how pathetic we sound.

Who are we feeling sad for?
Who are we feeling jealous for?
And who are we feeling angry for?
Is it our boys? Or really is it just us?

The reality is neither Ben or Finlay understand what Christmas is so they have no idea what they are missing out on. All we’re doing is upsetting ourselves.

Apart from the religious meanings, Christmas is about being thankful, being with family, and being happy, so that is what we have to focus on. Forget about the old traditions and expectations we had, and focus on creating new, different memories.

So this year we’ll wrap their presents and try to encourage them to open them Christmas morning, but if they’re not interested that’s ok. If it takes 5 days to open their presents, and we have to do it for them, then that’s ok too.

Whilst other families are busy getting ready for dinner we’ll take advantage of the quiet streets and take them out for a walk. We’ll go along the river all the way to the park, and not have to worry about anyone being on the swings when we get there. We’ll stay there as long as they want, there’s no rush of a family party to get ready for.

When we get home, we’ll watch Tigger and Pooh, Imagination Movers and Special Agent Oso, make puzzles, bounce on the sofas, anything that makes their day be a happy one.

In time, maybe they will understand what Christmas is. Maybe we will get to watch festive movies together. Maybe we will have family get-togethers, decorate the house, and open presents. Right now, that’s not what is important.

Our Christmas Day will be about doing whatever will make it memorable for them. Our happy memories will be created by seeing a smile on their face, so whether that’s opening a present, or simply bouncing up and down on the bed, that’s what we’ll focus on.

We’re not going to pretend it’s going to be easy to shut out the images that bombard us during December. We can’t say we won’t look at other families enjoying their Christmas and secretly wish ours were the same.
But the main thing is we intend on being thankful for what we do have rather than what we’re missing out on. We have two beautiful, healthy boys who we adore and the chance to make our own traditions, and happy memories this Christmas.

So here it is, Merry Christmas, Everybody’s having fun. Look to the future now, it’s only just begun

Monday, 5 December 2016

Important Notice!

Christmas is a difficult time for us, we both love Christmas, always have and when we had the boys we dreamed of establishing our own traditions and amongst other things enjoying hearty meals and socialising with friends and family. The reality is very different, the boys have no concept of Christmas and 25 December is no different to any other day. The hardest question to respond to is the one where folks with good intentions ask "are the boys excited about Christmas?" Of course we are working hard to increase the boys' understanding and awareness but that will take time.

The boys don't understand presents and are difficult to buy for, therefore we are planning to escape the festive build-up to our own little oasis of calm and peacefulness, Center Parcs, next Monday for a few nights. This will be our family Christmas present. Life is hectic, the pace is relentless and opportunities for respite are few and far between. That sounds like Center Parcs too but add in the fun and boys' happiness as vital ingredients to a great break in the forest. As a friend and autism parent once so truthfully commented, this is not an indulgence, it is vital for our mental welfare.

So! This means that the final night of the auction will be managed from deep in Whinfell Forest. Please pray that their wifi is up to the task and we ask bidders to please exercise patience. We probably won't have a dedicated response to bids in place until the evening so hang on and we will respond to you.

When the auction closes at midnight on 12 December, we will update all of the highest bids on the blog and then plan to go into radio silence so we can enjoy the rest of our break. We ask for your patience and understanding here and pledge to contact all winning bidders on Saturday 17 December before midnight that night.

Merry Christmas to all our readers and thank you for taking part in our important auction.

Tuesday, 29 November 2016

House Rools!

Here are the rules for Ben and Finlay's '12 Days of Christmas' fundraising auction - 

Bidding starts at 0001 hours on Thursday 01 December 2016 and the auction closes at midnight on Monday 12 December 2016. All bids timestamped before the closure time will be considered.

All bids must be made by email to benandfinlay@gmail.com. All bids will be acknowledged by email.

Bids by text and Facebook will not be accepted. 

Bids should be in whole pounds only.

Bidders should note that the auction administration is undertaken by a small number of people (ie one person) therefore updates cannot always be done immediately. It may be that someone has outbid you in an earlier email that we haven't had the opportunity to update on the blog.

There is an obligation on bidders to maintain an overview of those items they have bid on as auction administration will not advise you if you have been outbid.

The auctioneer’s decision is final.

Winning bidders will be notified by 0000 on 17 December 2016. Please be patient, we will contact winning bidders by this time. This is a wee bit later than usual, the reason for this will be explained later.

Items will be dispatched once payment has been received and confirmed. We will strive to deliver before Christmas but this relies on you paying timeously and us having the opportunity to quickly post things, Christmas delivery therefore cannot be guaranteed.

Where items have to be sent by post, the winning bidder will cover the postage. Please note that alcohol will not be sent beyond the UK.

We welcome any queries or questions about the various items on offer via the boys' e-mail address benandfinlay@gmail.com, we'll get back to you with an answer as quickly as possible. 

Happy bidding everyone! Please keep sharing with your family and friends, we really do appreciate your support. 

Monday, 10 October 2016

Ho, Ho, Bloody Ho!

There are friends who provide a year long Christmas countdown, shops who start teasing during the summer and of  course us who start ringing our jingle bells each October. We make no apologies and simply can't have Christmas without our festive showpiece and the opportunity for folks far and wide to bag a quality bargain in Ben and Finlay's auction! 

It's time for our masterplan to swing into action with our annual request for you to turn out your cupboards!

The auction entails a vast amount of work but such has been the boys’ remarkable progress since we started working with Skybound Therapies that we simply must return to Wales again in 2017 for another week of intensive therapy and exposure to true professionals to exploit their willingness and skill in continuing the boys’ fantastically positive development.

The whole trip costs in excess of £7,000 by the time we pay travel and accommodation costs for us and the boys, not to mention the intensive course fees. The auction is a huge help in meeting these costs, which may seem large but we tend to focus on the spend to save principle that by investing in the boys now, we will hopefully reap the benefits in future years. 

We know the boys’ disability is so profound that they will live with us as long as we are able to look after them (hopefully a long, long time yet!) and then who knows what the future will hold for them. They will not lead an independent life but what we are striving to do via their home program is teach them living skills such as feeding, toileting, dressing etc and functional communication (the boys are non-verbal) via the app Proloquo2go, so that when they are cared for by others they can hopefully communicate their needs and wants and be understood .If you think how far they have come in the last few years in terms of these important life skills, we believe they are certainly a good investment but of course we are biased!

So! We will once again be hosting the annual spectacular that is ‘Ben and Finlay’s 12 Days of Christmas Auction’ between 01 December and 12 December 2016. We of course hugely appreciate everyone who has supported this event in previous years, particularly those who have donated the many wonderful lots and those who have bid so freely in securing them. It would be great if we could get anywhere near the totals raised in previous years as this would make a huge dent in our expenditure for Wales in May 2017.

We are very conscious that there are also so many other equally deserving causes but once again seek your indulgence in supporting the boys to a brighter future. Many organisations now have dedicated national charities they support so our reliance on friends and colleagues and their network of contacts becomes ever more important.

Family, friends, colleagues, acquaintances – please have a look around your homes and workplaces and see if there is anything new that you can donate as a lot in our auction. We welcome all donations with open arms, be it a bottle of whisky, a voucher for dinner or a unique souvenir. Equally please suggest any businesses or organisations that would be worth approaching for a lot. We have letters prepared that we are happy to share if anyone thinks they have a friend or contact who may be able to support us.

We offer truly global exposure and a guaranteed audience of over 10,000 viewers over a short two-week window. Not a bad marketing opportunity!

We will hopefully have our old favourites but would love some new and different items to generate yet more interest in our two little stars. Speaking of stars, we always have room for a special star item to sit atop the tree; does anyone have a star quality item that could be an instant hit??

With your support we look forward to another fantastic event. Thank you; you don’t know how much your support means!

Sunday, 2 October 2016


This entry was very kindly written by Susan Gill, Daddy’s cousin and one half of the husband (Alan) and wife team who recently cycled from Lands End to John O’Groats in support of Ben and Finlay’s program and continued development –

“A journey of ups and downs but mostly Up!!

UP - It all started about 10 years ago when we had just completed a cycling holiday in Arran.   We’d had some tough cycles and the elation of finishing meant we celebrated in the pub and gradually got to discussing where next.  We’d unexpectedly bumped into some friends from Sheffield doing John O’Groats to Lands End and the idea was sown.   I’ve been thinking about this over the years but haven’t managed to sort the logistics so when I saw the advert in the CTC magazine last year we got the trip booked.

DOWN - I don’t think we’d fully thought through what the cycle would involve.   We did some training but not nearly enough and we both knew this before we set off.   Prior to the trip we managed 4 or 5 longish cycles but the majority of training was a maximum of 30-40 miles and not on consecutive days.  But we were quite upbeat about it.

We had to cycle 10 miles from Penzance to Lands End to start and this was possibly the worst part of the trip- horizontal rain and a galeforce headwind.  This was a definite down.

UP - Meeting everyone at Lands End we soon realised we had a great group and met some lovely people.  Two dropped out early in the trip but 17 of us stuck together throughout to get to John O’Groats.  Most of them were used to long cycles although we were probably more used to the hills than most.  We did have the wind with us most of the way affirming the decision to go with the prevailing wind and not up hill from south to north!

We cycled a total of 1067 miles and climbed 60,948 feet.  

UP - The hardest day was day 3 – we got to Minnions, the highest village in Cornwall and then cycled across Dartmoor in miserable weather.  We had Cornish Pasties mid-morning in a desperate attempt to consume enough calories to fuel the climbs.  We climbed a total of 6556ft in one day over 69 miles and couldn’t help thinking how beautiful it would be in better weather.  Highlights included sudden braking when a Dartmoor pony ran across the road in front of me – they were dead cute.  Also saw a few things mentioned in folk songs by one of our favourite bands Show of Hands (Widdecombe, Bridge across the Tamar).

UP - We crossed a few bridges on the trip.   The bridge across the Tamar, the Clifton suspension bridge and the Severn bridge in one morning, then from Inverness there were bridges both on and off the Black Isle.

Ironbridge was a really interesting place and definitely somewhere to visit in the car.  Again lots of steep hills and more bridges.

HEY’UP - Yorkshire did us proud as we cycled from Bakewell through to Huddersfield and then onto Hawes the following day.  It was great to get a bit of support with a few friends meeting us in Bakewell and another friend cheering us on in Bamford.   We set of really early and reached Monsall Head by 8.45am in the morning.  Those who know Alan will understand how much of an event this was.  Then we hit some vicious hills (25% gradients).  DOWN - Some of the downhills were quite scary as we flew down trying to miss potholes with the whites of our knuckles showing as we hung onto our brakes.  But the views were spectacular.

We arrived in Scotland at Gretna and then called at Lockerbie for lunch where Alan dressed the sheep statues in cycle helmets.  The weather then turned a bit bleak with heavy rain and a very rough road, for a night in a motorway services.

TAKING THE HIGH ROAD - Once we got over the slag heaps in Shotts, Scotland came into its own and we cycled through spectacular scenery with the best weather of the trip.    We saw red squirrels, eagles and a red deer fawn, and a mole ran across the road.

My family met us for lunch in Stirling and after Alan had had his neck massage he got more into the cycling.   We also called in to see some friends in Insh at their son’s wedding!

It’s strange how any of the downs have faded from our memories already – I only fell off once due to new cleats, the bin lorry that pushed us off the road, etc.

But the highs will remain in our thoughts - the support we had from so many friends was awesome.  Raising money for Ben and Finlay was also an unexpected plus.  I am overwhelmed by the number of people who sponsored us and also those who ran a cake bake and collected at a folk festival.  Alan was chatting to a bloke in one village at lunch time and this complete stranger handed us a fiver towards our fund raising.  We raised £2300 (and more is trickling in)– thanks everyone.   At the beginning we kept thinking we’ll have to keep going as all these  people have sponsored us.  We quickly found many people were folllowing our ride on Facebook which again really kept us going.  We just took one day at a time – it’s amazing what you can do – we had 17 days of cycling with only one day off – the most consecutive days we had done previously was 5 and they were all about 30 miles.  We had some really bad news as we were travelling home – one of our best friends who we had done much of our previous cycling with- was killed in a tragic walking accident in Spain.   He always said ‘use it or lose it’ and was the fittest 81 year old we knew.  So we’ve had a real rollercoaster of emotions since we got back – but he would want us to enjoy every moment and we hope our sponsorship money helps towards Ben and Finlay’s development and enjoyment of life. “

How can we thank you for your kindness, we are really humbled and truly grateful for your efforts. We really looked forward to your nightly updates during your trip. The sum raised is far in excess of your target and our wildest dreams, it just shows the snowball effect and reflects your great journey and endurance. Thank you both so so much for sacrificing your time and your bodies for our wee boys!