Friday, 22 December 2017

Thank you and Good Night!

Now that the dust is settling on our annual auction after another frentic few weeks, it's time to thank each and every one of you who have contributed to supporting Ben and Finlay in 2017. We are always bouyed by the positive comments of those who come to collect their auction winnings, which is equalled by their shared astonishment that we have to shoulder the financial burden of educating our boys in a way that gives them the best opportunity of learning and developing.

We would like to wish all our blog readers and supporters a very Happy Christmas and a prosperous and healthy 2018!

Christmas is a difficult time for us as depicted in the blog entry below. We are however gradually finding and increasing our own traditions and making it the special day that it is but in our own way. We are going to take a wee break from social media over the festive period, not because we are sulking, jealous or depressed at the life we should have had and that Facebook so frequently reminds you of at this time of year but because we want our special boys to be our sole focus and to enjoy Christmas in our way with them.

We may still post on the blog so look out for updates but in the meantime and until next year, it's good night from us!

Saturday, 16 December 2017

Christmas in Our World...

We're reposting this from last year as it is still so relevant and powerful...

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 7 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 10th 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 9,000th 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, we are not invited.

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......

Wednesday, 13 December 2017

They Think It's All Over....It Is Now!

We've had over 29,000 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 £5,641, 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 at the weekend. 

Nite all!

Thursday, 7 December 2017

Midnight at the Oasis!

Reposting this from last year - 

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 once again this year we are planning to escape the festive build-up and all those expectations to our own little oasis of calm and peacefulness, Center Parcs, on 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 two nights of the auction will be managed from deep in Whinfell Forest, Cumbria. 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 Sunday 17 December before midnight that night.

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

Wednesday, 22 November 2017

Ben & Finlay Rools, OK?

Before everyone embarks on a volley of bidding in our traditional festive fundraising auction for our wee boys, please, please, please take just a few minutes to read other parts of this blog that explain why we are doing this, please.

#rememberautismisforlifenotjustforchristmas


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

Bidding starts at 0001 hours on Friday 01 December 2017 and the auction closes at midnight on Tuesday 12 December 2017. 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 2017

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. 

 

Sunday, 12 November 2017

Application Form of Death



Disability Living Allowance (DLA) is a social security benefit in the United Kingdom paid to eligible claimants who have personal care and/or mobility needs as a result of a mental or physical disability. It is tax-free, non-means-tested and non-contributory. The benefit was introduced in 1992, integrating the former benefits Mobility Allowance and Attendance Allowance and introducing two additional lower rates of benefit. Prior to 2013 it could be claimed by UK residents aged under sixty five years. However, the benefit was phased-out for the majority of claimants between 2013 and 2015 and replaced by a new Personal Independence Payment. DLA can still be claimed by children under sixteen and can still be received by existing claimants who were aged sixty five or over on 8 April 2013.

Circumstances are reviewed periodically, our last application was in 2013 and the benefit was granted until early 2018. The application form runs to 41 pages and has 71, mostly freetext, sections. It cannot be done electronically. Just what parents need when their lives are so bloody challenging already. Just imagine, even for a moment, having to complete two!

Spare a thought…….