Be a life saver

Wills is only here today because a wonderful family donated their precious little girl's organs for transplant. His big sister, Hope, has been campaigning for more people to become organ donors and save the lives of the 10 000 people who are waiting for transplant in the UK, three of whom die every day. Yes, today, three people died waiting for a transplant and you can make the difference by registering to become an organ donor if you were to die and telling others about transplants and organ donation.

Hope's campaign was featured on Channel 4's 'Battlefront' today and you can watch it here. Please watch, it's only short, join their campaign  and please share.

The Day of the Diesels

We've just had one of the most exciting weekends ever. On Saturday, Wills, I and his sisters Hope and Ellie were invited to the premiere of the new Thomas the Tank Engine film - 'The Day of the Diesels' Like many children with autism, William is totally obsessed with everything to do with Thomas. He knows every line of every book and episode and learned to read well ahead of his sisters just so he could relive the stories over and over again. Thanks to his advanced reading skills, thanks to Amazon, he also knows exactly when new DVDs and books will be available and obsesses about how many weeks and days until they will be out. So, he was ecstatic to be one of the first children to see the new film. After counting down the 'sleeps' for weeks and spending Friday evening assembling his 'Thomas Driver' dressing up set and accessories, Wills was up at 6am on Saturday raring to go. Wills wasn't the only excited one as we travelled the the Vue Cinema at Leicester Square for a celebrity premiere and VIP party.

William loved the 'blue carpet' treatment and enjoyed telling 'The Fat Controller' all about his favourite stories.

This image is courtesy of Hit. All other images of the day are our own

At the end of the blue carpet we found an escalator that took us to William's absolute dream room - tables and tables of Thomas toys and a video wall!

Where do I start?

I was really pleased to see William sharing and playing nicely with other children as the party got busier. In the past, he has been reluctant (to say the very least!)  to share Thomas toys in hospital playrooms etc. It goes to show how much he is growing up at the moment.

Ellie and Hope enjoyed the face painting, balloons and the lovely breakfasty food (which I enjoyed too!).

taking a break at the video wall

I decided to join in and get into the spirit of the day and have Thomas painted on my hand.

We saw a lot of familiar faces and I chatted with Sally Bercow and Stacey Solomon, who I'd met at other functions. The celebrities were all so at ease and very down to earth. Most were running ragged looking for children among the tables, just like I was. Thomas is a great leveller!

After an hour of fun it was time for the film and William was one of the first into the cinema to take his place. We had reserved seats with special 'Thomas and Friends' popcorn and water.

waiting

Absolute delight when the film started!

The 'Day of the Diesels' centres around the rivalry between the 'Steamies' and the 'Diesels' on the Fat Controller's railway. The story opens as a fire breaks out on the Island of Sodor and two new firefighting engines - Belle and Flynn - are introduced. Thomas is asked to show the new engines around, leaving Percy feeling left out and alone. Nasty Diesel quickly uses the situation to trick Percy into believing Thomas doesn't like him anymore and he should come to the Dieselworks to make new friends there. This is the first time the Dieselworks have featured in a film and they were suitably creepy. The poor state of repair and lack of equipment in comparison to the Steamworks also helped explain why the Diesels are so unpleasant, they feel jealous and hard done to. 

Percy soon falls under the trickery of Diesel 10 and the other Diesels, including two more new characters - Den and Dart - leading to Thomas's kidnap, the Diesels taking over the Steamworks, danger for everyone and, of course 'confusion and delay!' What can Percy do to save the day?

You can find out when the DVD is released on Monday, 26th September, or even before if you enter our competition. Details coming up at the end of this entry. 

I was really honoured to find myself sitting next to one of the Rev W Awdry  the creator of Thomas writer of the original Railway Series. We chatted about William as his sheer happiness was so infectious. I told her all about his autism and all Thomas has taught him. I also told her how Thomas had kept him going when he was so ill and after his transplant. She was so touched to know that. I'm hoping to talk to her again soon about Thomas and his friends and how they are so important to children with autism, so watch this space... 'The Day of the Diesels' was no exception and helped William understand that people (and engines) don't always mean what they say and are not always the way they appear. Someone may seem distant and that they no longer care when they do very much, they are just busy. Likewise, someone may seem a friend when they are tricking you. This film taught both these lessons - difficult ones for children with autism to grasp - with the usual simplicity, repetition and demonstration of what can happen when things go wrong and how they can be resolved. 

After the film, we went back upstairs for another party, this time with Thomas biscuits and cakes. There were lots of children there this time but William managed really well. He was interviewed by the 'Hit' film crew who had fast seen they would get lots of material asking William about Thomas.

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After a fantastic time, and after being given an amazing goody bag which William made sure everyone knew he was, "so, so grateful, really grateful" for, we made our way home on the train. William couldn't wait to look through his bag. It was like Christmas.

William, Hope and Ellie have very kindly offered to share some of their goodies with you.  to win a copy this week.

The 'Day of the Diesels' is out on Monday 26th September but, thanks to the generosity of William's sisters, you can see what happens in this action packed film this week. All you have to do is comment on this blog or our facebook page by 5pm tomorrow (Tuesday 20th) to enter our prize draw and a copy may be on its way to you on Wednesday so you can watch it over the weekend. We will also send a Thomas and Friends Magazine.

There will be more Thomas goodies up for grabs over the coming weeks as William is also donating some 'Take and Play' engines the children received that he already has. He was really happy to have some of the new characters as wooden engines, as well as some of the other toys that have been released to go with the film. I'll talk more about those another day.

Thanks so much to everyone at Hit for such a fantastic day. It was one we will certainly treasure forever. 

Can we care too much?

On Monday, I listened to a really interesting programme on radio 4 about the 'complex relationship' between parents and children with disabilities and chronic health conditions.

It's well worth a listen if you have a child with special needs, or are/were a child with special needs. You can hear it here until Monday 19th September.

What do you think? As parents, we borrow our children as we watch them grow and then go out in the world independently, hopefully equipped by all we've taught them. Is it more difficult to watch your child with special needs 'grow and go'? Is it hard to trust them and their new partners to take on the responsibilities that you have lived with for so many years, and seem to be the only real expert in? Does it leave a larger and more painful chasm when they've left than when their siblings leave home because of the sheet amount of time and emotion you have given them?

I'd love to hear your thoughts and share them here on a future post.

We're back!

Hello everyone. We're back after a summer break. We hope you all had a fantastic summer.
What did everyone get up to? We'd love to know and share some stories here.

We had a busy holiday. We didn't go away but had lots of days out. Our big news is that William is now eating enough to have three nights off his overnight feed. This is a massive achievement for him as we still struggle with selective eating - Wills will currently eat only salt and vinegar crisps, strawberry yogurt and chocolate and pints and pints of vanilla milk shake (which is a limited edition that I fill my basket with each week, dreading the day it disappears from the shelves). He was eating fish fingers, which was great, but dropped those for cheese. We're currently having battles with the cheese too, despite him eating bucket loads last week!  Food and autism is a both fascinating and frustrating topic in this household at the moment!

Over the summer, our reviewers have been busy playing with toys and other exciting ideas to keep children with special needs occupied over the winter months.  I'll be featuring some of their stories and reviews over the coming days and weeks and have a big trip to the post office planned for tomorrow with a huge batch of Christmas toys to be played with and tested.

Today, I thought I'd bring you an exclusive competition with a special prize to brighten up the dark, cold  Autumn school-runs.  Next month, The Body Shop will be launching a brand new scent, based on and updating their popular White Musk range.  Where White Musk was quite a heavy musk. The new 'White Musk Libertine' is a lot lighter with the musk combined with notes of orchid, vanilla and turkish delight. I was introduced to it at The Body Shop Christmas preview and love my bottle. It quickly became my favourite scent. I wore White Musk when I was a teenager so it has that nostalgic feel but is also fresh, modern and uplifting.

You can win a bottle to try for yourself before it hits the shops next month. All you have to do is comment on this blog entry or on our facebook page. Good luck!