Wills loves chocolate, So does Oliver but it's poison!

Well, William loved his chocolate plaque he iced at the Thornton's party . I had to stop him eating the lot in one go as I'm not too sure what that would do to his stoma output! 

I also had to stop him sharing it with Oliver. Oliver loves chocolate but I wonder how many people realise it's poison for dogs! 

A few weeks ago, Oliver found and devoured a bar of chocolate Hope had bought me for a treat - unfortunately, it was 70% Lindt! A certain level of cocoa per kg weight is toxic to a dog and can cause death and quickly too. It takes between 4 and 72 hours from eating it for symptoms to start.  

Oliver ate his chocolate on a Friday - typical! Just like the children he has his emergencies over the weekend! 

Oliver ate enough to worry about toxicity but not quite enough to fear for his life. It was a scary weekend though while we waited to see if he would show signs of sickness and agitation that could lead onto fitting and death. Sure enough, on Saturday night, Oli was sick and in the early hours of Sunday morning, when he is usually sound asleep, he was pacing around and chewing and tearing up storage boxes. He made a huge mess! It was 3am, I couldn't just leave the children, so I decided to watch him closely and contact the vet at about 7. I slept with him downstairs but all went quiet at 5 so I went back to bed. Oli was back to normal by the morning. I think he had suffered a reaction to the chocolate but not quite enough to be something he couldn't get over quickly. Had he have eaten more it would have been different. 

The vet nurse told me that most dogs who get really sick and even die of cocoa poisoning are those who have scoffed all the hidden easter eggs or whole boxes of chocolates left on the side at Christmas, or even wrapped and under the tree! We keep all chocolate well away from him now, in rooms he doesn't go to and then out of his reach.

This wasn't the fist time Oliver's Golden Retriever appetite and naughtiness has had us worried for him. On Christmas Day, he stole a large piece of Christmas cake from a plate. It was a home made one and nearly 100% fruit. Raisons are also very toxic and Oli was just a little puppy then. Oli had eaten the chocolate some time before I found the chewed up wrapper, too late to make him sick, but we were with him when he ate the cake.  I spent most of Christmas Day syringing salt water into this poor little puppy to make him sick. I hated it but it saved his life. I told the story here .

My boyfriend had no idea that raisons were poison and told me it wasn't worth calling the vet. When I called for advice on the raisons and the chocolate it was taken very seriously indeed. If you have a dog it's well worth researching and reminding yourself what is poison for them, especially of you have children who may leave things around or feed them what they think is a treat. 

ice, snow and chocolate

So last week we went bowling and yesterday we went ice-skating, all be it on a plastic rink but Wills certainly didn't care. With the help of a penguin, he had a fantastic time and I struggled to get him off the rink and home.

He had lots of fin skating with big sister, Ellie, but look who else joined in...

Wills was pretty surprised to see Father Christmas in July! Our fantastic afternoon included, not only Father Christmas, but snow, hot chocolate in all sorts of amazing flavours, chocolate, elves and new friends and was all thanks the the wonderful people at Thorntons who decided to make their Christmas and centenary preview a magical Christmas wonderland for children, and their journalist parents. It was a great idea. The children had an amazing time, as did we parents. A lot of my colleagues and friends were there so it was lovely to meet their children.

We had another event at Warner's in the morning (which I'll talk about more another time) and Wills did really well being in two busy places, with lots of bustle. Last Christmas, we went to a Starlight Christmas Party at Number 11 Downing Street and Wills wouldn't join in with any of the activities because there were so many children around him. This time, he had a fab time playing with Batman and Green Mask toys at Warners and icing a chocolate plaque at the Thorntons party.

He did pretty well with it too. What was really great about this party is that the adults could join in too. I didn't skate, instead I took the opportunity to talk to some of the Thorntons staff and PRs while I could concentrate on what they were saying - and, of course, enjoy watching William and Ellie and taking loads of pics. I did join in with icing chocolate. What do you think?

There are loads of fantastic products you can ice - some Christmassy, like Santa here and the advent calendar.

Others are not specifically Christmassy, like the plaques and there are handbags and even a beer glass. What I like about the personalised icing is that you can order online or in the store and have any message at all on it. Some of our children have some important milestones that the shops don't cater for. We celebrate William's life and the amazing and brave donor family who made it possible for him to still be here with us every year on his 'transplant birthday' on which he gets some cards and gifts, including a helium number balloon and some iced Thorntons chocolate. This year, it looks like he'll actually eat some of it for the first time. It will be his third transplant birthday in November - where does the time go?

Wills was too busy skating and telling Father Christmas and his elves some of his stories about kings and queens and battles to eat chocolate yesterday but Ellie and I certainly enjoyed the samples.

To celebrate their centenary, Thorntons have developed a chocolate range of traditional tastes all made into chocolate bars. The Bakewell Tart chocolate is immense! I'll be popping into or Thorntons for some next time I'm in town. A new flavour has just been launches - traditional lemonade. It is also wonderful and even fizzes thanks to the addition of some magic popping candy. It would be great for children who enjoy sensory experiences and, according to one of my friends this morning, tastes great with a cup of freshly brewed coffee. I was still in a chocolate hangover this morning and haven't tried any of the samples I took away with me but will give that one a go tomorrow I think.

We played a great game of 'guess the flavour' of hot chocolate. Thorntons do white and milk hot chocolate with real chocolate flakes to add to milk but also do ginger, chilli, toffee and mint. Guess the flavour would be a great game to play on a cold winter evening (or a wet and cold summer one!). Ellie liked the toffee one best while favourite was the ginger. I'm going to get some in as a soother for winter colds, flu and just a general bad day.

The party was a wonderful end to the 'Christmas in July' preview season.

I'm as exhausted as the end of Christmas itself. I've been keeping an eye out for the great things for children with all kinds of special needs this Christmas, and ideas to make Christmas as magical but as easy as possible for everyone. I have some products, toys and food to review on here between now and the big day and am still looking for reviewers. All you have to do is receive a parcel, play with it, send me a photo and let me know what you think. Most of the time, you'll get to keep it as thank-you. Please get in touch on here or facebook if you'd like to know more.

Going Bowling

It can be really hard to find activities that all children of different ages and abilities can enjoy. We often find that Hope and Ellie are tagging along to a day out William has chosen and playing the role of big sisters rather than enjoying it for herself. Likewise, Wills often sits with his nose in a book round a gallery they have chosen to go to. One activity they all enjoy equally is bowling. With the help of the ramp, William can do just as well as his big sisters, and often beats them!

Last week, Wills went to a bowling birthday with some friends from his school. The group had very mixed abilities, with one in an electric wheelchairs with very limited mobility. They all had equal fun and were very competitive with their scores.

Wills got 96, including two spares. The bowling alley was fully accessible and there are some fantastic offers on for the holidays. Ours has two games and burger and chips for £4.99 per child which can't be bad at all for a morning of fun and lunch. We'll be back on a rainy day.

What are your plans for the summer?

So, the summer holidays have started. I wonder what readers have planned for the next six weeks. I know some are facing time in hospital. I can empathise with this having spent so many long summers, including last summer, in hospital with Wills. It's a horrible thing to be stuck in an air conditioned room while others walk in and out in sun dresses smelling of sun cream. How do you cope with those long admissions? I'm planning a feature on surviving hospital in the coming weeks and would love to hear from you.

Taking any family on holiday takes weeks of planning but to take a child with additional needs is like a military operation! Are you going away. If so, it would be great to hear where you went and how you did it. Could you write a review for us? Likewise, if you have any special days out it would be great to have a photo and review to put on here and share with others.

We're planning a 'staycation.' Wills is great this year and a holiday would have been fantastic but, this year, it's me who has put a spanner in the works by throwing oxygen into the, already complicated, equation. (That's another story told here ) We'll be spending lots of time at The Tower of London (hideous for wheelchairs!), Hampton Court and The National Portrait Gallery to let Wills enjoy his Kings and Queens. We'll try and take in a couple of castles too and we're going to do the Buckingham Palace Tour and have a day on an open top bus ride round London.  No doubt, we'll go to a steam railway to let him have a Thomas the Tank Engine themed day but I'm also hoping to stretch his interests a bit. William's sisters have chosen two days out each so we'll be off to art galleries and markets. We're planning some trips to the coast - Hastings is William's choice for obvious reasons and we always go to Brighton a few times each summer. We're going to the Lolipop festival too. Of course, we'll be taking Oliver for lots of walks in the woods and by the river. I think it will be a busy six weeks! I'll share what works and what doesn't work in the things we try and would love to hear what you're up to.

I also have some aims for William this summer. The biggest is to get him eating meals and we've had a good start on this. He's sitting at the table at every meal already and is really keen to try food. He hasn't liked much enough to eat more than a nibble yet but we'll keep on going till we find it. A lot is down to his confidence and I think it will take a few attempts at each food to get him really eating it.

Whether your hopes for the summer are simply to be at home together for as much of it as possible or if you have an exciting, once in a lifetime, holiday planned, I'd love to hear about it and how you managed to juggle it all. Whatever you have planned, I hope you have a fantastic time and I hope we all get some sun for the next six weeks.

Saying goodbye..

Today is William's last day of term. He's had a fantastic teacher this year. She has worked so hard to support his eating in school and has worked wonders. She has made him some amazing charts and bought in systems that have helped him to focus on his work with the promise of computer time to look at his beloved kings and queens afterwards. Wills has come on so far. He is way behind with his motor control but can write his name pretty well now.

The most amazing thing is that, over the last few months, he has talked more and more about his friends and the games they play and playtime. For the first time, he is well enough this year for a birthday party and has listed the children he really calls his friends to invite. In the past, he was focused on the adults in the classroom.

A lot of this is down to this amazing teacher (following on from the fantastic groundwork his previous teacher made) and the classroom assistants. The really sad thing is that his teacher is leaving today and his classroom assistants are changing. Thankfully, William is happy about his new teacher as he's had her for humanities this year - his favourite subject. His current teacher has made him a fantastic social story about the changes. It's especially sad to say goodbye to someone who has helped our children with addition needs. It's so much more than just the education. She has helped William become the confident little boy he is at the end of this year, a very different child to the one she met in September.

Thursday Food - 'chocolate play dough'

Yesterday, I was at the Amazon Christmas preview. There were some fantastic products there, one of which was this 'magic choc' set of mouldable chocolate, an ideas book and even an alcohol wipe to wash hands with before getting started. This would have been fantastic when William was in hospital. With the wipe included, it would be great for a train journey too. It's on our list for a rainy day activity for the school holidays, along with as much baking, cooking and playing with food as possible.

My aim for the summer holidays it to get William sitting down with us at meal times, having some food on his plate and eating something at the table each time, even if I have to add a couple of chocolate buttons or Wotzits or whatever his food of the moment is to his plate. Any advice and ideas would be most welcome.

Children's wheelchair services to be privatised

While the nation's attention was on 'hackgate' and custard pies, the government chose to make a very important announcement and one that would have clinched the headlines had it not been made one of the best days in recent history for 'burying bad news.'

More than £1bn of NHS services are to be opened to competition private companies and charities. The first will happen in April 2010, and included in this initial wave will be children's wheelchair services.

This will mean you can choose where to get your wheelchair, which would mean more choice and a better service...in theory! My concern is that regional purchasers will put contracts out to tender, much as they have with enteral feeds and pumps. This could mean a big variation in options depending on where you live. Of course, the cheapest services will win!

I also worry where this will stop. How far will the NHS become a PHS - privatised health service!

What do you think? Do you welcome these changes and developments? What are your concerns?

Christmas is coming....what do you want this year?

It's only July, I know, but doesn't Christmas seem to come along so fast as soon as the schools go back! Don't worry, I am going to share ideas for the school holidays later this week and next.  I'm spending most of this week dashing from one Christmas 2011 preview to the next and then looking through press releases and 'look books' to see what would be fantastic for our families and for toys and products to test and share on this blog.  I'm looking for children with all kinds of disabilities to test these out and share what they thought of them on here. Please get in touch if you would like to join our team of reviewers.  Thanks to those who have already got in touch already. I will get back to you shortly.

So, I've got boxes of things I think are great but what do you want for your children and your family this Christmas?  I've heard from a few families how difficult it is for relatives and friends to select the right gifts for their children. What kind of toys would they love? What would make Christmas easier for you? How do you cope with Christmas in hospital and what would you like your room and bed space filled with? Today, I'd love to hear your ideas so I can have a look for the kind of things you are after. If I find it, I'll get hold of it for you to review here and let others know if it met your expectations.

If you want an early Christmas present - don't forget to enter this week's competition.

Competition Time - Kate Middleton inspired treat for mum

Well, thankfully, after yesterday's scare we all woke happy and healthy in our own beds this morning., William's tummy all back to normal. I have no idea what caused him to be so unwell for a couple of hours but am very happy that my 'mummy instinct' was right and it was, apparently, just blip - a bit of a strange and dramatic one but just a blip. 

We spent almost the entire summer in a cubicle on a children's ward last year and I know of a few people that will be doing the same this year. When I'm in hospital, I really like treating myself with nice smellies.  Anything that's fresh and helps me feel positive hits the spot. This week's competition is for all mums who could do with a treat and I imagine that's all the mums who read this blog.  The prize is a treat inspired by Kate Middleton no less. 

The Duchess of Cambridge was the inspiration behind the new Yardley fragrance 'Royal English Daisy.' The scent is described as "reminiscent of flower filled meadows in the spring sunshine.  I always think Daisies are happy flowers and the scent is a bright and cheery one. It would be perfect for any mum, especially one who finds herself stuck in a hospital from time to time.

I have one of the limited edition Royal English Daisy set containing a eau de perfume and a body spray.  The sets will be coming out for the Christmas shopping season but you can have one right now. All you have to do is add a comment to this blog entry or on our facebook page to say you want to enter. A name will be pulled at random at 5pm on Friday 22nd July. Good luck!

'Mummy instinct' versus protocol

Children who have had small bowel transplants are supposed to go to hospital when their stoma output hits a litre. Occasionally, Wills pours around this much overnight when he's on his feed. It's just something he does and I think it's because he eats a lot in the day now (but limited variation hence still needing the feed) and he can't be sick because he had a Nissen's Fundoplication, so if his body doesn't want the feed it comes out as stomal fluid. 

Last night, he had more than he's ever had overnight. This morning all my alarm bells were ringing and my finger was posed on my phone to call the hospital but there was something telling me it's a blip and he's fine. He carried on pouring until about 8am and, admittedly we've stopped all feed and water for a bit, he's had nothing since. Protocol still says I should take him in but mummy instinct is watching my very pink, healthy looking child, asking for cake and milkshake (which he's not getting), singing along to his beloved 'Horrible Histories' DVDs and thinking that, if we can get the water he's lost into him during the day with no more high output then he's fine home. If he deteriorates or id he starts to pour again then we'll be in hospital within half an hour - the bags are packed.

If we go in he'll be put on a drip and then feeds started gradually and we could be in for several days, meaning he misses his last week of term and his school birthday party and the girls get disrupted and upset. Of course, if he needs it he needs it but there is just this nagging feeling that last night was one of his unexplained blips but just a bit more spectacular than usual -  he ate chocolate, a bag of crisps and had two big milkshakes in the day and then a litre of feed overnight so that could well have been too much for him.

There have been other times when protocol would say he's fine. When his temperature hasn't quite hit the 38 degrees centigrade that means he should be seen or his stoma output is 900mls but he looks terrible. In these situations, mummy instinct tells me he's sick and needs to be seen but, occasionally, I've been told to hang on and see if he hits the magic numbers. When he has been sick he has done and we've been in a few hours later or the next day. 

I know some of our transplant team read this blog and I'll be in trouble ;) but I do wonder sometimes where the role of 'mummy instinct' is for our children. Wills has been in hospital for 3 days on IV antibiotics before, waiting for blood culture results, because that's what protocol says when we knew he just had a cold. These days, I do tend to chat to our team and discuss things on balance and we often agree to sit and wait in these kinds of situations. I'll call them tomorrow and discuss todays predicament so they know and can decide if they want to see him sooner than his next scheduled appointment. Of course, I'll call them today if things deteriorate or continue. 

I wonder what other people do with the 'instinct versus protocol' issue? Protocols are great and, in the early days after transplant I'd have never questioned anything. I certainly still wouldn't question symptoms that were unusual for Wills but there are certain things where patterns emerge and you just get to know your own child. You also don't want to put then through procedures and treatment that you know an on call weekend doctor will do because all they can do is follow protocol and don't know the child or you. How much should you trust this instinct and your own personal understandings and experience? I'd be really interested to hear what people think.

In the meantime, I gave Wills about 50 mls of meds and flush an hour ago and nothing has appeared in his stoma bag yet. I'll restart the water in an hour and we'll see how we go. Then we'll move to diorylte and then back to feed. He's desperate for a milkshake. If all that goes OK without any more pouring then my instinct was right. If not, you know where we'll be and I won't be so quick to trust my feelings about things again. 

This is what it's all about

It's been an amazing week on 'Oliver and Wills.' Things have been so busy with emails from readers and also from companies getting in touch to offer products and some exciting days out to review on here. It certainly seems that 'Oliver and Wills' fills a gap in the parenting blogs and online magazines out there and all of this has spurred on plans I have to make it bigger, better and more exciting over the coming year.

This comment, left on the Facebook wall, made me feel really good. This is what this blog is all about and it's great to know it's doing its job. 

"As a mum of a physically disabled daughter who also has a movements disorder and an Autistic 

son I  am often met with a lot of negativity. Reading your blog and facebook page has made me 

smile and feel comforted that there are other people out there who know what its like to have 

children with special needs xxx"

It would be great to know what you think of the blog and any ideas you have about what you'd like to see us feature in the coming weeks and months. Don't forget our competition. You could win an Early Learning Centre HappyLand school children set. All you have to do is leave a comment here before 5pm today. 

Thursday Food - selective eating and summer apple pies

Like many children with a complex syndrome resulting in a range of health problems and disabilities, William is a pretty unique child.  He is the only child in the UK, and the only child we know of anywhere, who has had a small bowel transplant and has a form of autism. His Asperger's Syndrome causes big headaches when he's in hospital, especially when trapped in an isolation room for weeks on end which can occur at times if he is either highly immunosuppressed or infectious to others on the ward. With the help of a supportive medical team, we can manage that and, thankfully, William is no longer aggressive to medical staff. He'll ignore them but they can live with that. It does upset me, especially when a transplant team are so important in your life and other children will hug and chat to them where William avoids contact as much as possible with anyone other than his main consultant and a few favourite nurses.

Hospitalisations cause distress to all children but William is already fixed on his next scheduled procedures in November. Again, this is something we are learning to deal with and things are a lot easier than they were.

The biggest problem we face as a result of the combination of a form of autism and such a sever bowel disorder is eating. William wasn't allowed to eat for the first four years of his life and was dependent on an intravenous feed, delivered straight into his heart and into his bloodstream (TPN). He didn't learn the skills he needed to bite, chew and swallow. After his transplant, he could eat most things. A lot of children who have never eaten before find this a challenge but most can't wait to get stuck into food at last and overcome it. Not William! William is perfectly happy to have a tube feed. It took ages to get him to have anything but now we have the problem a lot of children with autism share. William is more than happy to live off a very select few, sometimes just one, one chosen item of food at a time. For a long time it was strawberry milk shake only. He now drinks strawberry or vanilla and eats a few bits and pieces, enough to come off tube feeds in the day. However, his selectiveness means he doesn't have the variety and balanced diet to come off an overnight tube feed. He'll sometimes eat digestive biscuits, sometimes gingerbread men, for a few weeks it was 'Wotzits' which was fantastic as it was the first savoury food he would eat. Unfortunately, the change of routine he faced when he went to the hospice at the weekend has put him off those. At the moment he'll have chocolate buttons. All of this is fantastic progress for him but it's so slow.

For many children, it's ok for them to be so selective and they don't have the tube, especially if they drink milk. William's needs as a transplant recipient mean we have to be more careful with diet and the feed will stay until he eats a balanced selection of food. His unique situation means that we don't  really know how best to get him to take this and there are no previous examples of children to inform us and our teams what has worked before. If anyone has any hints on selective eating then please do let me know and we'll give it a go.

What William really does enjoy is cooking. Cooking is fantastic for all children, especially those with feeding issues. I always hope he'll eat what we've cooked and I'm sure one day he will. Cooking and food are so important for Wills and so many children that I'm going to dedicate Thursday's blog entries to  all things food related.

On Monday, Wills and I made 'Summer Apple and Strawberry Pies.' We did cheat and bought our pastry. I'd have loved to have made it but, as I'm sure most readers are, I'm very keen on anything that makes things quicker and easier in the kitchen. I'll talk a lot about that in blogs to come and have been keeping a particular watch for things that will help us cheat at Christmas when I've been looking round the Christmas Previews over the last few weeks. I've also been looking out for things that children who have difficulties with motor control and using their hands would be able use easily in the kitchen.

Lakeland have some fantastic things for children Christmas and I'll be featuring some of those in future posts. One of the first things that caught my eye at their preview last week was an amazing little apple pie mould. I was thrilled to find one in my goody bag and couldn't wait to try it out with Wills.

cutting 

moulding and sealing it all together

getting them ready for the overn

William and I have made pies before and, although they tasted great, they weren't the most tidy of things. Wills has very poor fine motor control struggles with a lot of cutters, leaving half the pastry or biscuit on the work surface. He's a perfectionist and this just makes him frustrated and ready to give up, With this mould you can cut two large shaped pieces with the outside, then put them into the mould, load it with filling and close and press. Another little cutter is included to give you a small apple for decoration. Wills was able to do all of that himself the results looked the way he anticipated they would. He wanted to keep going until the pastry ran out which was great because he was interacting with food and also away from his current obsession - Horrible Histories - for half an hour. Our pies were lovely hot from the oven with ice-cream. Wills smelled one but wouldn't eat it but there's always next time!

Making our 'Summer Apple Pies' is really quick and easy peasy. We used  frozen short-crust pastry and just filled them with stewed apples and strawberries.

If you have anything you'd like to share or would like us to cover about eating then please get in touch. We'd also love to share any recipes that go down especially well with your family.

Looking at those pictures I can see Wills needs a haircut...and that's a whole new post!

What is this 'cystic fibrosis' that's all over the media today?

I'm sure I'm not alone this morning in feeling horrified at the thought of journalists gaining access to Gordon and Sarah Brown's son, Fraser's, medical notes when he was just a baby and had been diagnosed with the genetic condition, cystic fibrosis. Just as a family were coming to terms with very difficult and life changing news, confidential information they were only just getting to grips with themselves, was splashed all over the media without their consent. I only hope investigations get to the bottom of how that happened. No matter how famous you are, your medical details, and especially information about your child, is confidential and should remain so!

Once again, photos of The Browns at the time when Fraser was baby and newly diagnosed are splashed all over the British papers. My thoughts are with Sarah, Gordon and the boys. I know only too well how raw these times remain, not matter how long ago, how well your child is and how well you're coping with things. Many people reading these stories will sympathise, some will be able to empathise. Some won't fully understand as they don't know what cystic fibrosis is (CF).

CF is a genetic condition. Both parents have to carry a fault on a gene for a child to inherit the disease. There is a one in four chance a child will then have CF. The disease causes thick and sticky mucous to block the lungs and digestive system, leading to multiple infections and, eventually, life threatening lung damage. Many people with CF will eventually need a lung transplant to survive beyond their 20s and, without one, the average age of survival with CF is middle 30. It's a devastating thing to be told your child has! CF means a life time taking pills with every meal to replaces the digestive enzymes the body can't produce, antibiotics, inhalers and nebulizers to keep the lungs open and free of infection and physiotherapy at least once a day. As the disease progresses intravenous antibiotics are needed more and more often, resulting in frequent hospital stays. It is a hard thing for a child to grow up with.

Faith Langley knows this only too well.  Faith is a member of postpals, a lovely charity that enables people to send post to children who spend a lot of time in hospital. You can read Faith's story here.

Faith is  having to spend more and more time poorly in hospital with lung infections caused by her CF and her Mum, Kerri, fears what the future will bring for her.

Faith, Kerri and Faith's sister, Alice, had pinned their hopes on the exciting Gene Therapy research programme that offered the hope of a cure for CF in Faith's lifetime. Gene Therapy won't fix the damage CF has already done but would stop it progressing any further. It was a huge hope for the 9000 families in the UK who have a son or a daughter with CF. This year, it was announced that the recession is causing a huge dent in the charitable donations this project is dependent on. The whole programme, and the future of children like Faith, is now dependent on raising £6million. The faster the money is raised, the faster there could be a cure for CF.

Kerri is not taking this news lying down. In September, she's climbing Ben Nevis to raise money for the CF Trust to put towards Gene Therapy research. If you'd like to help fund this vital research, please visit Kerri's page and make a donation, however small.  They have the answer, they have the cure. They know what they have to do to make it happen. The project just needs money. What better way to help than to support a mum at the same time.

Maybe some of those who should be feeling very guilty and sorry for their actions concerning Fraser Brown should dig deep in their pockets today and help secure his, Faith's and all those other 9000 people their future!

If you'd like to know more about CF, have a look at the CF Trust Website. You could also have a read of Rebecca Saunders' fantastic blog - Life of a Mum of Two With CF. 

Competition Time

As if the last few weeks of the school year aren't busy enough with sports days, end of term shows and assemblies, prize givings and fetes, for journalists and editors they are even more crazy. It's 'Christmas in July' season and we are all frantically rushing round the preview shows put on by stores and companies to introduce us the their Christmas collections so we can review and write about them. It's a busy time of year but it's great fun too - especially for a big kid like me. I'm having a fantastic time looking round the shows looking for ideas and products that would be especially good for our children. What do you buy a young boy with Asperger's Syndrome, who has a higher than average intelligence but needs instant stimulation and repetitive play and needs his toys to be simple enough to operate to prevent frustration escalating into a meltdown? What about children with sensory disabilities? What is there out there for children who want age appropriate toys but struggle to use their hands or for those who spend lots of time in hospital and need activities that will keep them going for hours but can be done in bed? These are the kind of things I'm looking for.

Last week, I went to the Mothercare and Early Learning Centre show. There are some fantastic things in both stores. I was really impressed with some toys that would be fantastic for children who enjoy sensory play - I'll be coming back to them.

All of my children have loved playing with the Early Learning Centre HappyLand. It's a fantastic range with lots of interactive buttons to press on the buildings and people and cars to take through the HappyLand world the child creates for them. There are lots of sets at various prices so children can build their collections up. I can vouch for how hardy it is, our set lasted through all three of the children and each added to their older sibling's collection.

William has poor fine motor control in his hands. He still struggles to write and things like lego have always frustrated him because he can't control how hard he grasps and presses so the things he is carefully trying to build get broken. He has outgrown HappyLand now but he spent hours with it as everything is so easy. It's all designed for the little hands of toddlers so the people are easy to grasp and to put in and out of cars and buildings. William played with it  regularly until he was around five. Our set is now at my parents' house and he still plays with it when we are there - in fact his big sisters join in with him too but don't tell anyone!

For our re-launch competition 'Oliver and Wills' have a Happyland Sunflower Schoolchildren set. This competition is an easy one. All you have to do is leave a comment on this post or on our facebook page and, on Friday, we'll pick a winner at random. Good Luck!

A logo...and a competition

Do you like the new look? Today, I had the thought that it would be nice to have a logo for 'Oliver and Wills,' something that reflects the blog as a general parenting blog for families who have children with special needs, but illustrates the inspiration behind it all. I sent a call out on twitter to see if anyone would be willing to design something for us and had a reply from a lady in France - @Emy_nagel. Emy looked at the site and felt moved to draw some ideas for us. From her first sketches I knew the design was perfect.

In her twitter biography, Emy describes herself as an illustrator, children's author, princess by the day and ninja by night. Emy has a fantastic blog, spotted and swing. It really is worth reading over a nice cup of something. It's full of beautiful and whimsical art. Something to escape into. I feel so honoured to have this logo designed by such a talented artist.

With the blog re-launch, facebook page and logo, I think it's time for a 'launch competition.' Watch this space....

Focusing on the siblings

If you go into any book shop and look for the parenting section you will be inundated with books on all sorts of topics. Very few of these address the specific needs of parenting children with special needs or with chronic and life threatening health conditions. When William was waiting for transplant I really wanted to find one all about that. I also wanted a diary, like the 'baby's first year' type of thing but just for the milestones and experiences we were facing. I knew those things wouldn't be there but looked everywhere I could think of in the hope that I would be able to will so hard one would be there.

I have managed to find a few books over the years. One of them, 'Living with a Seriously Ill Child' by Dr Jan Adridge  has a chapter entitled, "You mean you have other children too?" This  chapter opens with a box with a big question mark in it - an empty box full of questions is how Dr Aldridge believes life can feel like for siblings and how other people see them. All the focus tends to be on the sick child or the child with a complex disability. I know there have been many times that's been the case for Hope and Ellie and I know there are times when I haven't done the best I can to help them.

When Wills was very ill and waiting for transplant they felt very cut out of things and isolated. I know they have both felt different from their peers and friends. They get upset that our family is so different and crave 'normality.' I hear again and again, "Why can't we just be a normal family?" Their upbringing is different and, while I try and make their childhoods as good as they can be, life does revolve around William, they have a lot of their childhood, before and immediately after William's transplant, living with their grandparents and going to new schools while I stayed in hospital with William. William's health is stable at the moment but, as any parent who has a child on the autistic spectrum will know, his needs remains very much at the centre of things. Going out and about is restricted by his wheelchair, he hates eating out and has real sensory issues with the smell of food so will have a very genuine meltdown and busy public places are stressful for him, especially if the level of sound and lighting would over stimulate him. 

We're 'lucky' that we, currently at least, have respite opportunities with a hospice. I say 'lucky' because so many families don't meet criteria for respite but it's not lucky at all because it means his medical team still think there is a good possibility he won't survive to the age of 19. We go the the fabulous Shooting Star Chase and, on Thursday, they called to say there was a cancellation for the weekend and William was first on the reserve list. Normally, we all go and stay but I wasn't able to sort out my own oxygen in time. So, for the first time, Wills is there alone and the focus is on Hope and Ellie this weekend and all the things we can't do with Wills. We've had continental breakfasts with magazines on the table,  eaten out, we've been to his school fete and had a BBQ and cream tea, we've shopped and we're just about to eat out again and go and see Les Miserables (I've just jumped on here while the girls hog the straighteners and mirrors). 

Research has shown that siblings of children with complex medical conditions and special needs are more likely than their peers to have mental health issues as adults, especially anxiety and depression. With so many cuts ending respite for children with disabilities, this can only get worse - let alone the fact that the siblings deserve services of their own! William used to go to a holiday club twice a week in school holidays, enabling me to either get some work done or take the girls out. Guess what - they've all been cut! 

With respite and special time with siblings being so squeezed I'm wondering how other people are coping and what you do to make sure the whole family feel special and have as fun, action packed and 'normal' a life as possible. I'd love to know. This is a big issue and we'll be coming back to it on 'Oliver and Wills.' Join in the discussion by commenting here or come and join us on Facebook.

Come and join us on Facebook

Oliver and Wills is now on Facebook. Come and find us and 'like' our page to keep up to date with what's going on behind the scenes of the blog, current opportunities for getting involved with reviewing products and to share ideas about what the blog should address and feature.

New for families of children with special needs

It's been a while since I posted on this blog. I've spent a couple of months adapting to a change in my own health (and am blogging about that here ) and, as these kind of life events so often do, this has led me to re-thinking life, work and everything!

This blog,  'Meltdowns, Tantrums and a Puppy' has been following the story of William, my little boy with a complicated little mix of health challenges, mild cerebral palsy and asperger's syndrome, and his dog Oliver. Oliver has been helping Wills to interact and manage his world in all sorts of ways and I was planning to train Oliver to be his full time assist dog. However, Oliver has done so much for Wills just by being his pet and best friend. Since having Oliver, Wills has developed a level of social confidence I could only dream he would have and is coming along really well with physical skills, such as dressing and walking short distances without his wheelchair. It's amazing but, especially given my own physical limitations, it means that it is probably enough for William to have Oli as his special pet dog.

I've spent the last week thinking about what to do with my blogs and the kind of features I write for the national press. I've also spent the last week wondering around the many 'Christmas in July' shows where shops and companies present their Christmas collections to us journalists so we can write about them and present them to you. I love reading Christmas ideas features but, so often, the toys and games aren't relevant to William. The more I wondered around the shows, the more I found myself getting drawn to products that would be good for him, and then to products that would be good for some of the other children we know, those with more severe disabilities and those who rely on sensory stimulation for their entertainment and education...and there it was, my idea for developing this blog.

Inspired by my two 'boys,' 'Oliver and Wills' is now a new parenting blog for families who have a child with special needs - be it a physical disability, learning disability,  sensory disability, autism, chronic illness... anything that adds an extra challenge to parenting and family life. Every day,  I'll be sharing our stories and stories from other family blogs, I'll review products and services and I'll include features on things such as entertaining children in hospital, coping with sibling anxiety, coping with the stress. They'll be competitions and prizes too so please spread the word.

I'll also include features about our canine members of the family, particularly the friendships between dogs and all children of ages and abilities.

If there's anything you'd like to see addressed on here, please do get in touch and let me know. I'm also looking for families to test products and days out so please get in touch if you'd be willing to have some fun and try something new.